What is fetal tissue research? And why is it important to medicine?
Doctors and scientists are denouncing the Trump administration's decision to cut funding for research that uses fetal tissue, saying that the material is essential for life-saving medical research.
The administration announced Wednesday that it would drastically cut federal spending on medical research that uses "fetal tissue from elective abortions." The move will affect multimillion-dollar research projects at the National Institutes of Health and the University of California, San Francisco.
Supporters of the administration's decision have likened the research to a marketplace that deals in " aborted baby body parts ." That kind of language can elicit a visceral reaction. Researchers strongly disagree with that portrayal, however, and say fetal tissue research projects are meticulously vetted.
"There's a misconception that fetal tissue research is the wild, Wild West," said Ellie Dehoney, vice president of policy and advocacy for Research!America , a nonprofit group that advocates for scientific research.
"There’s a very careful look at every research grant. If a project makes the cut, it means there is a belief by scientists not involved in research that there’s a beneficial purpose for advancing science," Dehoney told NBC News.
Indeed, the American Medical Association, which supports fetal tissue research, has a detailed code of ethics for how to carry out such research.
Sam Hawgood, the chancellor of the University of California, San Francisco, said the university's research using fetal tissue to find a cure for HIV — now halted by the administration's action — was based in sound science. "UCSF exercised appropriate oversight and complied with all state and federal laws," he said in a statement .
Why is fetal tissue used in research?
Scientists use fetal tissue as a source of fetal cells. These cells have been used for research since the 1930s, and the government has funded such research since the 1950s, when it was used to create one of the biggest medical advances of the 20th century: the polio vaccine.
Since then, fetal cells have been used in hundreds of thousands of other research projects. Scientists have used them to create other vaccines, such as the rubella vaccine, and to improve a wide variety of techniques used in medicine, such as in vitro fertilization. They are also used to study birth defects, eye diseases, Parkinson's and Alzheimer's disease, AIDS and spinal cord injuries.
Scientists say fetal cells are superior to adult cells mainly because they can transform into any cell in the body. They also replicate quickly, and don't have the same immune response as adult cells.
This means researchers can inject them into lab mice to study human diseases without the risk of the cells being rejected by the animals' immune systems.
A ban or strict limitation on fetal tissue research would be "catastrophic," said Dr. Elias Zambidis, a pediatric oncologist at Johns Hopkins who does research on stem cells.
Why put [fetal] tissue in a biohazard box? Why not use it to help others?
Zambidis said he has given a great deal of thought to the medical ethics of fetal tissue research. "I understand there are two sides to the controversy, and I personally respect both sides," he told NBC News.
"But why put that tissue in a biohazard box?" Zambidis asked. "Why not use it to help others?"
"If you establish that you’re using tissue that’s causing no harm to a living being, and it holds the potential to save lives or restore health and function, that's important work," Dehoney said.
Zambidis agreed. "Fetal tissue research absolutely saves patients," he said.
Are there effective alternatives?
Last December, the NIH announced a $20 million initiative aimed at finding alternatives to fetal tissue for research purposes. As part of Wednesday's announcement, Department of Health and Human Services said it would "ensure that efforts to develop such alternatives are funded and accelerated."
Some researchers, including those in Zambidis' lab at Johns Hopkins, are already using one potential alternative: induced pluripotent stem cells, or iPS cells. These don't come from fetal tissue; they come from skin or blood cells and have been reprogrammed back into an embryonic-like state.
But iPS cells aren't the perfect substitute. Experts say the cells aren't quite ready to be used as effective alternatives to fetal cells. Indeed, Zambidis calls them a "bad Xerox copy," but predicts the science will continue to advance so that one day they will work as well as fetal cells.
"Our holy grail is to create alternatives to fetal stem cells. But it’s not going to happen tomorrow," Zambidis said.
Fetal cells continue to be the gold standard in certain types of research, and indeed, any alternatives developed will have to be comparable in quality and function. That's one reason why fetal cells are still needed, so scientists can see how new technologies stack up against them.
"Whatever the next best thing is, it will still have to be compared to the gold standard," he said.
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Erika Edwards is a health and medical news writer and reporter for NBC News and "TODAY."
December 9, 2015
12 min read
The Truth about Fetal Tissue Research
The use of aborted fetal tissue has sparked controversy in the U.S., but many scientists say it is essential for studies of HIV, development and more
By Meredith Wadman & Nature magazine
A colony of embryonic stem cells.
Every month, Lishan Su receives a small test tube on ice from a company in California. In it is a piece of liver from a human fetus aborted at between 14 and 19 weeks of pregnancy.
Su and his staff at the University of North Carolina at Chapel Hill carefully grind the liver, centrifuge it and then extract and purify liver- and blood-forming stem cells. They inject the cells into the livers of newborn mice, and allow those mice to mature. The resulting animals are the only ‘humanized’ mice with both functioning human liver and immune cells and, for Su, they are invaluable in his work on hepatitis B and C, allowing him to probe how the viruses evade the human immune system and cause chronic liver diseases.
“Using fetal tissue is not an easy choice, but so far there is no better choice,” says Su, who has tried, and failed, to make a humanized mouse with other techniques. “Many, many biomedical researchers depend on fetal tissue research to really save human lives,” he says. “And I think many of them feel the same way.”
An explosive climate has surrounded US research with fetal tissues since July, when an anti-abortion group called the Center for Medical Progress in Irvine, California, released covertly filmed videos in which senior physicians from the Planned Parenthood Federation of America bluntly and dispassionately discussed their harvesting of fetal organs from abortions for use in research. Planned Parenthood is a non-profit women’s health provider that received US$528 million of government money in 2014, much of it in reimbursements for services ranging from contraception to cancer screenings, which it provides largely to poor women. Abortions, which are performed at about half of Planned Parenthood’s 700 clinics, constitute 3% of its services. A handful of clinics in two states supply fetal tissue for research.
The videos provoked a furore that has intensified over the past few weeks. On December 3, the Republican-led US Senate voted to strip Planned Parenthood of government funding. This is despite the fact that fetal tissue research is legal, the US National Institutes of Health (NIH) has been funding it for decades and President Obama is sure to veto the bill, should it reach his desk. A few days earlier, on 27 November, a gunman shot dead three people at a Planned Parenthood clinic in Colorado Springs, Colorado. In a post-arrest interview, the suspect is reported to have said “no more baby parts”.
The episode has shone a spotlight on a little-discussed arm of biomedical research, raising the questions of why, how and how widely fetal tissue is used. To find out, Nature turned to an NIH database of research grants funded in 2014 to find those using fresh human fetal tissue, and in October contacted 18 researchers working with it. Su was one of only two who were willing to be interviewed. Most requests were declined or went unanswered; a public-affairs officer at one major Texas university refused to have a researcher speak to Nature to keep that person “safe”.
The figures show that in 2014, the NIH funded 164 projects using the tissue, at a cost of $76 million. This is slightly less than half of what the agency spent on work with human embryonic stem cells (ES cells), which has also been highly controversial, and 0.27% of the $27.9 billion it spent on all research. (By comparison, the UK Medical Research Council spent 0.16%—£1.24 million ($1.9 million)—of its total spending on research on five projects involving fetal tissue in the 12 months up to 31 March 2015.) Analysis of the NIH projects shows that the tissue is used most heavily for research on infectious diseases, especially HIV/AIDS; in the study of retinal function and disease; and in studies of normal and anomalous fetal development (see ‘ Fetal tissue research by discipline ’).
Opponents argue that the work is not necessary because other model systems and techniques can be used. “This is antiquated science,” says David Prentice, the vice-president and research director at the Charlotte Lozier Institute, the research arm of the Susan B. Anthony List, which is an anti-abortion organization in Washington DC. “There are better and, frankly, more successful alternatives.”
But supporters of the research counter that fetal tissue is legally obtained, that it would otherwise be destroyed, that such work has already led to major medical advances and that, if there were better alternatives, they would turn to them. “Fetal tissue is a flexible, less-differentiated tissue. It grows readily and adapts to new environments, allowing researchers to study basic biology or use it as a tool in a way that can’t be replicated with adult tissue,” says Carrie Wolinetz, the NIH’s associate director for science policy.
“I get very frustrated when misinformed people go on about how it can all be done with computer models or cell cultures or stem cells or animals,” says Paul Fowler, a reproductive biologist at the University of Aberdeen Institute of Medical Sciences, UK, who in January published a study using livers from aborted fetuses to probe the impacts of maternal smoking on liver development. “In some areas, the human is absolutely dramatically different than rodents.”
Some argue that the entire episode represents a thinly cloaked attempt to attack and limit access to abortion by eroding support and funding for Planned Parenthood. “People are talking about fetal tissue, but really what this discussion is about is abortion,” says Shari Gelber, a specialist in maternal–fetal medicine at Weill-Cornell Medical College in New York City, who has argued for the value of the research.
Laboratory lines Cell lines derived from aborted fetal tissue have been fairly commonplace in research and medicine since the creation in the 1960s of the WI-38 cell strain , which was derived at the Wistar Institute in Philadelphia, Pennsylvania, and MRC-5, which came from a Medical Research Council laboratory in London (see Nature 498, 422–426; 2013 ). Viruses multiply readily in these cells, and they are used to manufacture many globally important vaccines, including those against measles, rubella, rabies, chicken pox, shingles and hepatitis A.
An estimated 5.8 billion people have received vaccines made with these two cell lines which, with others, have become standard laboratory tools in studies of ageing and drug toxicity. (Research with such lines is not covered by US regulations governing the use of fresh fetal cells and tissue nor captured in the NIH database.) In the past 25 years, fetal cell lines have been used in a roster of medical advances, including the production of a blockbuster arthritis drug and therapeutic proteins that fight cystic fibrosis and haemophilia.
But off-the-shelf fetal cell lines are of limited use for scientists because they do not faithfully mimic native tissue and represent only a subset of cell types: WI-38 and MRC-5, for example, were derived from fetal lungs. The lines can also accumulate mutations after replicating in vitro over time. And creating humanized mice such as Su’s requires whole pieces of fetal organs to provide sufficient numbers of stem cells. For all of these reasons, researchers turn to fresh tissue.
In the United States, this is collected at medical centres and clinics that perform abortions under a patchwork of laws and regulations governing consent, tissue collection and transfer (see ‘ Fetal tissue and the law ’). US law says that clinics can recover “reasonable payments” to offset the costs of providing the tissue, but it makes it a felony to profit from doing so. Planned Parenthood officials say that its clinics obtain full and informed consent from women choosing to donate fetal remains for research, and the organization announced in October that its clinics will no longer recover costs of $45–60 per specimen for collecting the tissue.
From the clinics, fetal tissue is then often passed to biological-research supply companies, which act as intermediaries and process the tissue before selling it to researchers. Su pays $830 for each sample of fetal liver tissue supplied to his lab by one of the most widely used suppliers, Advanced Bioscience Resources in Alameda, California.
HIV and AIDS The category of fetal tissue work that draws most NIH funding is the study of HIV and AIDS: it accounts for 64 of the 164 NIH grants. Researchers in this field have long struggled with the paucity of effective models for this uniquely human disease. The standard models, macaques, are expensive to breed, are infected with SIV instead of HIV and have immune responses that are different from those of people. The flexibility and adaptability of fetal tissue—and its richness as a source of stem cells—has allowed the creation of a number of mice with humanized immune systems.
Prominent among these is the BLT (bone marrow–liver–thymus) mouse, which was created in 2006. This model is made by destroying the animal’s immune system and then surgically transplanting liver and thymus tissue fragments from a human fetus into the mouse. The immune system is further humanized with a bone-marrow transplant, using blood-forming stem cells from the same fetal liver. The animal enables studies of, for instance, immune responses that are key to developing an effective HIV vaccine. The mouse has “accelerated the study of HIV pathogenesis and novel approaches to harness anti-viral immunity to control HIV”, reads a recent review by several NIH-funded scientists who are using the mouse.
The mouse has also helped to demonstrate that prophylactic drugs may prevent vaginal HIV infection—a strategy that is now in late-stage human trials. The animal is currently being used to examine how genital infection with herpes simplex virus alters immunity at the vaginal mucosa, making it easier for HIV to infect. In a similar vein, Su is now using his humanized mouse to examine the mechanisms by which hepatitis C and HIV co-infection can hasten liver disease.
There are drawbacks: the BLT mouse’s average lifespan is relatively short, at only around 8.5 months, because the animals tend to develop cancers of the thymus. And the humanized immune system is not inherited, so the model must be created again and again—leading to the constant demand for fetal tissue that so disturbs abortion opponents.
Human development In some research areas, fetal tissue may, in time, be replaced by other materials and methods: alternative, flexible cell types, including human ES cells and induced pluripotent stem (iPS) cells, and organoids, which are lab-created cellular structures that resemble tissue from normal organs . But there is one area in which, scientists say, fetal tissue is needed by definition: studies of early human development, and why it sometimes goes wrong.
“Human fetal tissue is likely never going to be replaced in some areas of research, particularly relative to fetal development,” says Wolinetz. And the application of such work goes far beyond understanding developmental disorders such as congenital heart disease or other malformations, says Neil Hanley, an endocrinologist at the University of Manchester, UK. “For a wide range, now, of adult diseases and disorders, we know that they have their origins during very early human development,” he says—type 2 diabetes and schizophrenia are both cases in point. “And unless you understand normal you’re not going to understand abnormal.”
The 30 developmental-biology grants involving fetal tissue that were awarded by the NIH in 2014 range from a study of the differentiation of myoblasts, which are the embryonic precursors of muscle cells, to several examinations of development of the urogenital tract—studies with relevance, for instance, to hypospadias, a common condition in which the urethra fails to close and the underside of the penis is incompletely formed. One project is creating a three-dimensional atlas of gene expression in the genital tubercle, the precursor of the penis. Another is probing gene activity in cells lining the fetal intestine to help explain excessive intestinal inflammation in premature babies. Hanley says that such studies are important, particularly because gene regulation — the finely tuned symphony that controls when and where genes are active—can vary strikingly between species, so findings in other animals often do not hold true in humans.
More than half of the 30 grants are for studies of brain development, and many of these projects are seeking advances in combating maladies such as autism, schizophrenia and Alzheimer’s disease. Larry Goldstein, a neurobiologist at the University of California San Diego School of Medicine in La Jolla, uses cells called astrocytes from the brains of aborted fetuses to nourish neurons that he has derived from iPS cells and that have mutations associated with Alzheimer’s disease. The astrocytes are thought to secrete factors that keep the neurons healthy in culture, and he uses the system to study the pathogenesis of the disease and to test potential drugs.
Goldstein hopes eventually to derive the astrocytes, too, from iPS cells. But “the human fetal astrocytes that we get at present are the gold standard that we use, and will use, to compare astrocytes that we make by differentiation”, he says. He has also used neurons from aborted fetal brains to compare with the neurons made from iPS cells4. “As long as fetal tissue is available, this is a very valuable use of it,” he says.
Another 23 of the NIH grants using fetal tissue involve eye development and disease. Damage to the retinal pigment epithelium (RPE), a single layer of cells at the back of the eye, has a key role in a number of eye diseases, including age-related macular degeneration, the most common cause of blindness in adults in the developed world. The 2000s saw advances in ways to create cell cultures with RPE dissected from the eyes of fetuses, allowing scientists to study the function of these cells in a dish. And although some scientists have turned to stem cells to generate RPE, like Goldstein they continue to use fetal tissue as a benchmark of normal development and function.
Goldstein agreed to speak to Nature , he says, because “somebody has to speak up responsibly”. He stressed that he and his colleagues think hard about the ethics of their work. “We are not happy about how the material became available, but we would not be willing to see it wasted and just thrown away.”
Occasionally, fetal tissue is used for clinical work. Last year, a company called Neuralstem in Germantown, Maryland, in collaboration with scientists at the University of California, San Diego, launched a trial in which stem cells from fetal spinal cord were implanted to treat spinal-cord injuries. In May, researchers in the United Kingdom and Sweden launched a study in which dopaminergic neurons from aborted fetuses are transplanted into the brains of patients with Parkinson’s disease (see Nature 510, 195–196; 2014 ). Research with fetal tissue is less controversial in countries where abortion is more widely accepted.
Uncomfortable viewing The Planned Parenthood videos caused even some supporters of fetal tissue research to feel uncomfortable. In one video, physician Deborah Nucatola, the group’s senior director of medical services, describes how she crushes fetuses above and below key organs to preserve them intact for research. She also described turning a fetus into a breech presentation to deliver the head last, when the cervix is more dilated, thus preserving the brain.
This raised the question of whether physicians are altering abortion techniques to accommodate research requests, violating a widely held precept of research ethics. Arthur Caplan, a bioethicist at the New York University School of Medicine, dismisses the videos as “pure politics”, but some of the footage “did get my eyebrow to arch”, he says. “You can’t use a different approach to the abortion to try to preserve something. Those are just no-no’s.”
Planned Parenthood spokeswoman Amanda Harrington says that the organization is not aware of any instances in which the method of an abortion has been changed to preserve organs. But, she adds, “if minor adjustments that have no bearing on the woman’s health and safety are done when the woman has expressed a desire to donate tissue, that is entirely appropriate and ethical and legal”. Women’s health and safety, she says, “is always the number one priority”.
The question for many scientists is what the fallout of the controversy will be. On the heels of the Colorado shootings, some Republicans in Congress backed off earlier attempts to defund Planned Parenthood, and President Obama is expected to veto any bill that does so. This means that the lasting damage of the videos may end up being inflicted not on Planned Parenthood’s budget, but on science. Since July, four bills that would criminalize or otherwise restrict the research have been introduced in the US Congress, and lawmakers have launched similar efforts in a dozen state legislatures. (Missouri, Arizona and North Dakota already ban the research.)
Su felt the climate for his research grow colder when, on October 1, a new North Carolina law was signed that makes it a felony to sell fetal tissue for any amount within the state. Su receives the tissue he uses from outside the state, but the message behind the new law concerns him. “I hope this current controversy, or possible congressional interventions, won’t slow down biomedical research,” he says. “The benefit is bigger than the drawback on this.”
The controversy “absolutely puts fetal tissue research at risk”, says Caplan. “Young scientists are unlikely to enter a field riven with controversy, where funding is uncertain and physical threats are a real possibility.”
Caplan says that parallels could emerge with events in the early 2000s, when the use of human ES cells in US research became politically fraught. Then, tight federal regulations governing NIH funding of the research were adopted, but some states, including California and Massachusetts, responded by pouring money into the science all the same.
“To move ahead, the reality is that fetal tissue research need not be funded or permitted everywhere,” Caplan says. “It needs to be allowed somewhere.”
This article is reproduced with permission and was first published on December 7, 2015.
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This is Issue 2 of the On Science.
The body parts of preborn babies that die through the act of elective abortion are harvested and sold to desiring scientists for experimentation. These acts are heinous, controversial, and have a history of ethical misconduct. 
The Trump administration has taken bold and deliberate actions that protect and respect the dignity of human life from conception to natural death. The administration has made changes in federal funding policy for research using human fetal tissue from elective abortions, to be in better alignment with ethical research practices.
Here we evaluate the actions and policy changes made by the Trump administration that have been taken since his term in office and analyze the current standing of federal funds used to support fetal tissue research. First, we give a brief overview of how federal tax dollars are used to fund medical research in the U.S.
Federal Funding of Medical Research
As part of the U.S. Department of Health and Human Services ( HHS ), the National Institutes of Health (NIH) is the primary agency responsible for funding medical research. Since American taxpayer dollars fund the NIH budget, the American people are the primary benefactors and beneficiaries of advances in scientific research. The NIH invests approximately $41.7 billion annually into biomedical research, of which the majority (>80%) is awarded for extramural research through competitive grants to more than 300,000 researchers at more than 2,500 universities, medical schools, and research institutions throughout the country. A smaller portion of the NIH budget (~10%) supports intramural research conducted in its own NIH laboratories and through contracts with other universities.
Most Americans oppose using tax dollars to pay for a woman’s abortion, let alone having more of their tax dollars used for purchasing and experimenting on aborted baby body parts. Furthermore, the use of aborted fetal tissues in the production of any medicines becomes highly problematic for anyone who must choose between violating their conscience or accepting a treatment tainted with abortion-derived materials.
Administrative Actions and Policies
A timeline of policies enacted by the Trump administration regarding research using human fetal tissue from elective abortions is outlined below.
- September 24, 2018: The Department of Health and Human Services (HHS) terminated a contract between Advanced Bioscience Resources (ABR), Inc. and the Food and Drug Administration that provided human fetal tissue from elective abortions to develop testing protocols. The Department was not sufficiently assured the contract between the FDA and ABR included the appropriate protections applicable to fetal tissue research or met all other procurement requirements. The department initiated an audit of all acquisitions involving human fetal tissue to ensure conformity with procurement and human fetal tissue research laws and regulations.
- December 10, 2018: NIH announced a $20 million funding opportunity for research to develop, demonstrate, and validate experimental models that do not rely on human fetal tissue from elective abortions. This action demonstrated that HHS is committed to providing additional funding to support the development and validation of alternative models.
- June 5, 2019: Results from the HHS audit and review led to the administration’s decision to let a contract with the University of California, San Francisco (UCSF) expire, which involved HIV studies using human immune system (HIS) mice (humanized mice) that were generated with aborted fetal livers and thymuses. HHS discontinued intramural research – research conducted within the National Institutes of Health (NIH) – involving the use of human fetal tissue from elective abortion. No current extramural research projects (research conducted outside NIH, e.g., at universities, that are funded by NIH grants) would be affected during their currently approved project period. An Ethics Advisory Board would be convened to review future extramural research grant applications that propose to use fetal tissue from elective abortions.
- July 26, 2019: HHS issued a notice ( NOT-OD-19-128 ) requiring a statutory ethics review of extramural proposals submitted on or after September 25, 2019. This affected new extramural research grant applications or current research projects in the competitive renewal process that propose to use fetal tissue from elective abortions and that are recommended for potential funding through NIH’s two-level external scientific review process. NIH implemented requirements in which investigators must provide scientific justification of the use of human fetal tissue (in light of available alternatives) with details regarding procurement and costs, and information about how the applicant/contract offeror will use HFT.
- July 31, 2020: The new NIH Human Fetal Tissue Research Ethics Advisory Board for Fiscal Year 2020 convened to review research involving human fetal tissue proposed in competitive NIH grant and cooperative agreement applications and recommend whether, in light of the ethical considerations, NIH should fund the research project—pursuant to a law passed by Congress. The recommendations will advise the Secretary on whether federal funds should or should not be withheld because of ethical considerations. The advisory board is required to submit its findings no later than August 18, 2020, and it will dissolve 30 days after it does so. In the meantime, any new or competitive renewals that propose to use human fetal tissue from elective abortions that are within a fundable scoring range and R&D contract proposals that have been identified through the Source Selection process as apparently successful offerors, will not receive any federal funds to conduct the proposed studies.
- withhold funds for thirteen of the research proposals
- not withhold funds for one of the research proposals.
The Secretary will make any funding decisions based on the recommendations of the Board, as it pertains to components of the proposals that use HFT. The final Report of the Human Fetal Tissue Research Ethics Advisory Board-2020 describes the detailed findings and recommendations to the Secretary. It should be noted that there was 100% consensus from all board members (15 to 0 vote) to withhold funds for two of the research proposals and nearly unanimous consensus (14 to 1) to withhold funds for three research proposals.
These actions taken by the Trump administration over the last two years are important for several reasons. They blocked federal dollars from supporting a subset of fetal tissue research from elective abortions, they ensured that appropriate protections applicable to research involving human fetal tissue from elective abortions are consistent with statutes and regulations governing such research, and they guaranteed the adequacy of procedures and oversight of this research in light of the serious regulatory, moral, and ethical considerations involved. Finally, they supported and accelerated ethical alternatives that do not rely on human fetal tissue from abortions.
Extramural Funding of Fetal Tissue Research
In light of fetal tissue policy changes outlined above, we performed a comprehensive tracking study to get a snapshot of the number of NIH-funded proposals that currently use human fetal tissue from elective abortions. The total dollar amount supporting human fetal tissue research is reported by the Department of Health and Human Services (HHS), NIH Categorical Spending , which estimates funding for various research, condition, and disease categories (RCDC). When reporting categorical spending, NIH does not distinguish between human fetal tissue from miscarriages/stillbirths and elective abortions. Therefore, our search identified human fetal tissue research using both illicit (i.e., elective abortion) and licit means (i.e., natural death, miscarriage).
The total amount of funding of fetal tissue research for fiscal years (FY) 2016-2021 is summarized in Table I below. Fiscal years that precede the current funding cycle are in actual dollar amounts, whereas current and future amounts are estimated spending. According to these data, approximately 0.3% of the total NIH budget funds research using human fetal tissue. The vast majority (>99%) does not.
Fetal Tissue Projects Funded in FY 2019
Each extramural human fetal tissue project funded in FY 2019 (any grant approved for funding during the period of October 1, 2018-September 30, 2019) was then analyzed. Data was exported from the search described above (in red) and each project was individually queried and analyzed using the Federal Research Portfolio Online Reporting Tools (RePORT) , a searchable database of NIH-funded research projects. There are many different types of NIH Research Project Grant Programs, with the most common type being the R01 generally awarded for 3-5 years. Therefore, depending on the type of project that is funded, and when funding started, the fetal tissue grants analyzed for FY 2019 are in various stages of the funding cycle (i.e., different start and end dates).
Project information for each grant award was collected. If an investigator obtained multiple awards from different funding institutes (e.g., NIAID, NINDS, NIDDK, etc.) for the same project number, the data were condensed and the cumulative award amount was reported. Program projects (collaborations between different investigators, sometimes at different organizations) that were awarded funding for fetal tissue research were included in the analysis; each subproject of the program project was counted separately. Intramural projects at NIH facilities that showed up in the search were excluded from analysis because intramural projects are forbidden to use fetal tissue from abortions, as described above, because of the HHS decision on June 5, 2019.
A summary of the total number of investigators using fetal tissue, the total number of fetal tissue projects, and the project end dates for all projects funded in FY 2019 (at the time of analysis) is shown in Table II . A total of 135 investigators are project leaders (principal investigators) for 144 projects that use human fetal tissue (some investigators receive funding for multiple fetal tissue projects). A total of 35 projects had a project end date in 2020, meaning they should be up for competitive renewal. However, after our analysis was complete, a subset of projects expired in 2020 and their project end date changed to 2021, suggesting that they requested a one-year No-Cost Extension and gained one more year to conduct their studies. Therefore, the actual number of extramural fetal tissue projects ending in 2020 is less, and those for project end year 2021 are likely more.
Human Fetal Tissues and Organs Harvested for Research
The majority of projects awarded in FY 2019 (over 50%) investigate some aspect of HIV/AIDS and many use the BLT ( b one marrow, l iver, t hymus) humanized mouse model. These studies require an abortion clinic to harvest human fetal livers and thymuses from ongoing abortions, which are then sold to desiring investigators. Other projects include basic science research to study Zika infection, macular degeneration, infertility, fetal development, and brain disorders. These projects use various fetal organs including but not limited to: eyes, brains, urinary tract tissues, intestines, hearts, gonads, livers and thymuses. Some examples of harvested tissue descriptions excerpted directly from research project applications are given below in Table III . To the best of our knowledge, none of the FY 2019 projects fund human transplant studies.
Extramural Fetal Tissue Funding for FY 2019 by Organization
A summary of FY 2019 fetal tissue funding by awardee organization is in Table IV . Sixty-eight organizations in 25 states, plus the District of Columbia, obtained extramural funding in FY 2019 for fetal tissue projects. For 2019, the University of North Carolina at Chapel Hill is the number one awardee of projects that use fetal tissue, with close to $10 million. Two additional fetal tissue projects were awarded to organizations outside the U.S., in South Africa and Spain.
The calculated total amount of funding for the entirety of each fetal tissue project at each organization was determined (data not shown). In one example, the University of Washington was the awardee organization for a total of seven projects that use human fetal tissue in FY 2019. One of these projects entitled “Laboratory of Developmental Biology” funds the Birth Defects Research Laboratory, a fetal tissue repository that routinely provides human fetal tissues from elective abortions to other scientists in the U.S. NIH awarded this lab $794,881 in FY 2019, but the project has been funded for over 50 years, so the total NIH funding amount reported is $13.8 million dollars. The estimated total funding for these FY 2019 fetal tissue projects alone has a history exceeding $500 million.
Note that each grant is typically composed of two or more specific aims and that it is possible that not all aims use fetal tissue to achieve their purpose. Therefore, the total funds used to sponsor fetal tissue research may be something less than the total dollars reported.
Summary and Perspective
This thorough analysis uncovered important facts about the current state of NIH-funded research using human fetal tissue. Of primary importance is that under current policy, NIH is prohibited to fund intramural research using human fetal tissue from elective abortions. However, the NIH is still estimated to spend over $100 million taxpayer dollars in fiscal year 2019 to fund human fetal tissue extramural research. NIH funding for human fetal tissue supports research at 68 different academic organizations throughout the U.S., not including two international organizations in South Africa and Spain.
Extramural research projects that are new or up for competitive renewal after September 25, 2019 and that originally would have proposed use of fetal tissue will now fall into one of the following categories:
- Projects that propose to use human fetal tissue from elective abortions must include a “Human Fetal Tissue Justification” description to ensure that human fetal tissue is utilized for research only when scientifically justifiable. If recommended for potential funding through NIH’s two-level external scientific review process, the project will undergo review by the NIH Human Fetal Tissue Research Ethics Advisory Board . Funding may or may not be recommended based on ethical considerations.
- New projects that exclude human fetal tissue from elective abortions, or competitive renewals that change to no longer use human fetal tissue from elective abortions, may be submitted. These projects may or may not choose to use alternative research materials and models.  If recommended for funding through NIH’s two-level external scientific review process, funding is probable.
- Current research projects in the competitive renewal process that use human fetal tissue from elective abortions may be allowed to expire on their project end date, or grantees may extend the final budget period one time for a period of up to 12 months, without additional NIH funds, and without prior approval ( No-Cost Extension ). Once the extended period ends, the research project may expire or move to categories A or B above to apply for an additional period of funding.
During our analysis, we found significant inadequacies in the way NIH categorizes and reports human fetal tissue research. The NIH does not distinguish between and/or explicitly report human fetal tissue research from miscarriages/stillbirths and elective abortions. Therefore, it is impossible to estimate the fraction of funded projects that use organs and tissues of electively aborted fetuses.
The NIH’s obscuration of the actual number causes uncertainty that can act to minimize perceptions of the significance of the problem. This practice also masks any projects that are successfully using ethically-sourced human fetal tissue from miscarriages/stillbirths. The current NIH policy of not reporting which fetal tissue source is being used (elective abortion or natural death) indicates that NIH leadership also considers there to be no scientific distinction either.
We offer the following recommendations, which would further strengthen NIH funding mechanisms regarding fetal tissue research.
- RECOMMENDATION #1 : NIH leadership must make a distinction between elective abortion and miscarriage fetal sources when reporting federal spending. There should be two different NIH Spending Categories for human fetal tissue research: (1) human fetal tissue – elective abortion, and (2) human fetal tissue – non-iatrogenic death. This is no different from current policy that requires the NIH to distinguish between funding for stem cell research using different human cell sources (embryos, hiPSCs, adult stem cells, etc.). Like embryonic stem cell research, there is an ethical distinction to be made with human fetal tissue from elective abortions, and the NIH funding policies and procedures should be consistent with this attitude.
- RECOMMENDATION #2 : HHS should prohibit funding of both intramural and extramural research projects that propose to use electively aborted fetal tissue. 100% of all human fetal tissue funding should be directed to research that uses only fetal tissue from the preborn that died a natural death (miscarriage/stillbirth).
Such actions are essential to ensure that every American taxpayer dollar is used to fund research that supports and values the sanctity of every human life and respects the consciences of all scientists, physicians, and patients, without exclusion or exploitation of any group within our society.
Acknowledgement: We thank Michele Rifelj for excellent assistance with research analysis.
Tara Sander Lee, Ph.D., is a Senior Fellow and the Director of Life Sciences at the Charlotte Lozier Institute.
James Sherley, M.D., Ph.D., is an associate scholar at the Charlotte Lozier Institute.
 T. Sander Lee, M. B. Feeney, K. M. Schmainda, J. L. Sherley, and D. A. Prentice. Human fetal tissue from elective abortions in research and medicine: science, ethics, and the law. Issues in Law and Medicine , vol. 35, 1:3, 2020
 T. Sander Lee, M. B. Feeney, K. M. Schmainda, J. L. Sherley, and D. A. Prentice. Human fetal tissue from elective abortions in research and medicine: science, ethics, and the law. Issues in Law and Medicine , vol. 35, 1:3, 2020
Did You Know ?
In the fourth week, the embryonic heart starts beating. The neural tube, which becomes the brain and spinal cord, forms. At this point, a woman has likely only been aware of her pregnancy for one week.
In the seventh week after conception, networks of neurons produce brain waves that have been recorded as early as 6 ½ weeks after conception. The embryo spontaneously moves his arms, hands, and legs, and may even hiccup. The embryo’s heart now has all four chambers.
By the seventeenth and eighteenth week after gestation, the fetus shows a clear response to pain in multiple studies, and at least one brain pathway is mature enough to create a perception of pain. The fetus also practices breathing, crying, and breastfeeding in the womb. The fetal heart has beat over 20 million times and circulates about 55 quarts of blood per day.
In the eighth month of pregnancy the fetal brain is ready to learn! At 32 weeks after conception, neurons are creating 40,000 new connections, called synapses, every second! With repeated exposures, the fetus can learn flavors, nursery rhymes, songs, and even words that she will recognize after birth!
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- Published: 07 December 2015
Fetal tissue research under threat
Nature volume 528 , page 163 ( 2015 ) Cite this article
- Medical research
This article has been updated
The US Senate has just voted to defund one of the providers of aborted fetal tissue for research. Such research is too valuable to become embroiled in the bitter abortion debate.
When a journalist invites scientists to discuss their work in the pages of Nature , it is rare to encounter a resounding silence. But that was the case when our reporter reached out to biologists in the United States this autumn to ask about the value and applications of their research with human fetal tissue. Just two of the 18 scientists we contacted were willing to go on the record with details of their work.
The reticence is understandable. A hostile political climate surrounds this research in the United States, where the release in July of covertly filmed videos ignited a firestorm of controversy.
Made by anti-abortion campaigners, posing as executives of a fictional biological-supply company, the videos showed senior physicians from the Planned Parenthood Federation of America frankly discussing their supply of legally aborted human fetal tissue for research.
The videos insinuated that the non-profit health-care provider was breaking the law by supplying the fetal tissue to biological-products companies for financial gain. But despite the numerous leading questions, the videos show no law-breaking. In exchange for the fetal tissue, the organization received only legally allowable costs: less than US$100 for each specimen, at 1% of its 700 clinics. If Planned Parenthood, which mainly provides contraception, cancer screening and other important health care, was seeking to get rich, it chose a strange way to do so.
That has not stopped Republican politicians from seizing on the videos to make repeated, inaccurate and inflammatory accusations. Presidential hopeful Marco Rubio, a US senator from Florida, charged, with utterly no evidence, that the collection of fetal tissue has “created an incentive for people to be pushed into abortions so that those tissues can be harvested and sold for a profit”. Ted Cruz, a US senator from Texas who is also contending for the Republican presidential nomination, declared that Planned Parenthood is “an ongoing criminal enterprise”.
It is time for a de-escalation of the rhetoric and the creation of a space for calm and rational discourse.
It is not surprising then that, since July, even the small number of Planned Parenthood clinics supplying fetal tissue has dwindled. Or that when an unhinged gunman launched a murderous rampage last month, he chose a Planned Parenthood clinic in Colorado as a target.
Nor is it surprising that US scientists who use fetal tissue are choosing to stay silent about the value of their work rather than to defend it publicly and face the real possibility of physical attack. (One scientist told The New York Times that in response to threats against him his institution had posted a guard outside his lab.) The two US-based biologists who did speak to Nature should be applauded for their courage.
As the News Feature on page 178 shows, research that uses fetal tissue is worth defending. And there are ways in which the scientific community can rally round without putting individuals at risk. Admirably, the Association of American Medical Colleges (AAMC) is showing the way. The AAMC released a statement last week signed by 58 academic medical centres, scientific societies and allied groups.
The statement outlined the medical advances that have been made possible by fetal tissue, and described the value of its current applications in areas such as developmental biology and research on infectious diseases. The authors wrote of their “grave concerns” about the numerous legislative proposals now in play in the US Congress and in a dozen states — proposals that would restrict or prohibit fetal tissue research. They warned eloquently that the proposed laws “would limit new research on vaccines not yet developed, for treatments not yet discovered, for causes of diseases not yet understood”. Nature shares the authors’ grave concerns, and joins the AAMC in calling on US lawmakers to reject proposals that restrict access to fetal tissue.
The current episode is a reflection of a larger politics of division that has taken hold in the United States, and which has worsened alarmingly in recent months. It is time for a de-escalation of the rhetoric and the creation of a space for calm and rational discourse.
In the case at hand, that could begin with greater separation of the issues of fetal tissue research and abortion. Clearly, there is fair, honest and understandable disagreement on the morality of the latter. In a democracy, opponents of abortion are free to do their best within the law to change the law. But nobody benefits when they target by proxy an activity that is tangential to the act that they abhor and that is doing a great deal to advance our understanding of health and disease.
08 december 2015.
An earlier version of this article incorrectly stated that six clinics recovered legally allowable costs for fetal tissue. In fact, we are unable to determine the exact number of clinics. Also uncertain is the number of remaining clinics that still supply the tissue. The text has been updated to reflect these uncertainties.
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Published : 07 December 2015
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DOI : https://doi.org/10.1038/528163a
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Pregnant Individuals’ Views on Fetal Tissue Research in the United States
Natalie c. spach.
1. Center for Bioethics and Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, USA
2. University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA
Elana F. Jaffe
Kristen a. sullivan, ilona t. goldfarb.
3. Department of Obstetrics and Gynecology, Massachusetts General Hospital, Boston, MA, USA
4. Harvard Medical School, Cambridge, MA, USA
Jean R. Anderson
5. Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA
6. Department of Gynecology and Obstetrics, Johns Hopkins University, Baltimore USA
Jenell Coleman Fennell
Sappho z. gilbert.
7. Yale School of Public Health, Department of Chronic Disease Epidemiology, New Haven, CT, USA
Marielle S. Gross
8. Department of Obstetrics, Gynecology and Reproductive Sciences, University of Pittsburgh, Pittsburg, PA, USA
9. Department of Obstetrics and Gynecology, University of North Carolina School of Medicine, Chapel Hill, NC, USA
Ruth R. Faden
Anne d. lyerly, associated data.
Fetal tissue research has driven significant medical advances but remains publicly contentious in the United States. The views of pregnant individuals in the U.S. regarding the donation of fetal tissue offer an important and previously unexplored perspective on this issue.
We conducted a secondary analysis of data from two separate broader qualitative studies. Pregnant and recently pregnant individuals (n=79) from clinical sites at the University of North Carolina at Chapel Hill, Johns Hopkins University, and Massachusetts General Hospital were interviewed individually using a semi-structured guide addressing a range of issues related to infectious disease research and pregnancy, including the acceptability of fetal tissue research. Interviews were transcribed, coded, and analyzed for emergent themes.
Among this sample of predominantly Black (61%), reproductive-aged pregnant and recently pregnant participants, the majority (72%) generally supported fetal tissue research. The following three themes were identified: choice, respect, and meaning. Respondents discussed deeply personal nature of decisions surrounding fetal tissue research, emphasizing the importance of informed consent and respect for the person’s emotional state when approaching for consent. The ways in which participants regarded how to respectfully handle fetal tissue also shaped views about the acceptability of donation, both for and against. For many participants, fetal tissue donation to research represented one way of ascribing meaning to pregnancy termination or loss.
Among this diverse sample of pregnant and recently pregnant individuals, most were supportive of fetal tissue donation for research. A better understanding of pregnant individuals’ views on this topic may lead to policies and practices that are congruent with the needs and values of people facing decisions regarding the disposition of fetal remains.
Among a diverse sample of pregnant and recently pregnant individuals, most were supportive of fetal tissue donation for research, citing choice, respect and meaning.
The research use of human fetal tissue has led to major advances within science and medicine, primarily through the unique ability to create human cell lines from these tissues to study diseases. 1 Beginning in the 1960s, fetal tissue procured from aborted fetuses has been used for an array of scientific purposes, including vaccine development 1 and research in infectious diseases, neurologic disorders, type 1 diabetes mellitus, and other conditions. 2 , 3
Despite its widely recognized scientific benefits, the use of fetal tissue for research remains highly controversial in the United States (U.S.). The debate around fetal tissue research is largely due to its deeply rooted history in the ethically and politically complex discourse around abortion and the moral status of the fetus. 4 Related questions have also been raised on how to handle fetal tissue and appropriate approaches to the informed consent process. In the interest of promoting fetal protection in response to concerns surrounding the vulnerability and potential exploitation of pregnant individuals 5 —especially the worry that a person undecided about pregnancy continuation could be persuaded to have an abortion in order to donate their fetal tissue for financial compensation or societal contribution 4 , 5 — federal regulations regarding such research have been adopted. These include prohibition against the sale of fetal tissue or financial compensation to pregnant individuals and the requirement that physicians defer obtaining informed consent for fetal tissue donation until after the pregnant individual has given informed consent for an abortion. 6 Proponents of fetal tissue research maintain that safeguards, including strict regulations surrounding the informed consent process, can prevent inducement. 7
Debates related to fetal tissue donation regulations and research protocols have been highly contentious. While the viewpoints of scientists, politicians and religious groups have framed these debates, views of the individuals who might personally face a decision about whether to donate fetal tissue have been absent. Stigma, silence, and secrecy around abortion 8 often constrain these voices from entering public conversations on topics related to abortion, including fetal tissue research. And while research on fetal tissue after miscarriage is less common, 9 silence around miscarriage has obscured views about disposition of fetal remains, especially after early pregnancy loss. While these perspectives are critical to inform debates surrounding complex ethical questions related to fetal tissue research and future policy decisions, 10 the views of pregnant or recently pregnant individuals on this topic in U.S. contexts remain unknown.
In order to address this gap, we assessed pregnant individuals’ views on fetal tissue donation and fetal tissue research as part of two larger qualitative studies examining perspectives on participation in infectious disease research trials during pregnancy. 11 , 12 Given the use of fetal tissue in infectious disease research, 1 , 13 the opinions of pregnant individuals—as potential participants in or beneficiaries of such research—may inform policy conversations and future protocol design.
The data for this analysis were collected between August 2016 and August 2017. This was a secondary analysis of data from two separate broader qualitative studies, in which we conducted in-depth, semi-structured qualitative interviews with pregnant and recently pregnant individuals to assess their views about participating in research for the prevention or treatment of HIV or Zika virus infection. The data from our HIV cohort were collected as a part of the Pregnancy and HIV/AIDS (PHASES) Project, to inform guidance for ethically acceptable research at the intersection of HIV and pregnancy. 14 The data from our Zika cohort were collected as part of an effort to inform the development of vaccines in the context of the Zika pandemic. 12
We used qualitative methodology in order to surface themes, generate hypotheses and provide descriptive information about topics for which there is little information and novel understandings are desired, as is the case with fetal tissue research. Our priority in using this methodology was to capture the range of considerations potentially relevant to individuals who might be in a position to participate in research that intersects with pregnancy, rather than identify the relative importance or prevalence of views across a representative sample of U.S. patients. 15
In both studies, we used non-probabilistic sampling to recruit English-speaking participants at clinical sites to participate in interviews. In the service of our broader study aims, sampling included individuals either living with or at risk for infection. A total of 80 pregnant or recently (within 2 years) pregnant individuals living with or at risk for HIV in the U.S. were interviewed at three clinical sites, including University of North Carolina (UNC) in Chapel Hill, North Carolina, Johns Hopkins University (JHU) in Baltimore, Maryland, and Massachusetts General Hospital (MGH) in Boston, Massachusetts. Participants were at least 18 years of age.
Participants were asked questions about a variety of topics at the intersection of research and pregnancy, including willingness to participate in various types of research and views about selected research rules and practices. 11 , 16 At the end of the interview, participants were asked about their views on fetal tissue research. Transcripts were reviewed iteratively for emergent themes. 17 These methods, including information about our sample size, selection strategy, and interview guide development, are described in greater detail elsewhere. 11 , 12
The research and analysis presented here were approved by the Institutional Review Boards at the University of North Carolina at Chapel Hill and the Johns Hopkins School of Public Health (PHASES), and the Massachusetts General Hospital Institutional Review Board (Zika).
Written, informed consent was obtained from all participants. Interviews were conducted individually and based on a semi-structured interview guide. For questions specific to the current analysis, the interviewer provided a brief description of fetal tissue research and then asked participants a series of questions about their views on donating fetal tissue to research ( Box 1 ). Questions included whether they believe fetal tissue research should be allowed and explored their reasons for supporting or opposing it. The interviewer asked participants about their personal willingness to donate fetal tissue if they had an abortion or miscarriage in the future. Responses were probed for greater detail where appropriate. At the end of the interview, participants provided demographic information related to age, self-identified race and ethnicity, education, marital status, and pregnancy history. Race and ethnicity were included in our study as mandated by the US National Institutes of Health, consistent with the Inclusion of Women, Children and Minorities policy.
Interview Guide Questions About Fetal Tissue Research.
Now I would like to ask you a couple of final questions about research involving women who have an abortion or have a miscarriage. Sometimes scientists conduct research using the tissue remains of the pregnancy to study different diseases.* Scientists call this “fetal tissue research.” Research like this is allowed if the woman provides consent, but there is a lot of disagreement about whether it should be allowed at all.
Do you think fetal tissue research should be allowed? Why or why not?
Do you think pregnant women who have a miscarriage or abortion in your community would be willing to give the remains of the pregnancy to scientists to do fetal tissue research? Why or Why not?
If you had a miscarriage or abortion sometime in the future when you got pregnant again, would you be willing to give the remains of your pregnancy to scientists to study in this way? Why or why not?
The interviews were recorded and transcribed verbatim; the interview data were analyzed using thematic analysis in NVivo 11 (QSR International, Melbourne, Australia). 18 Codes were developed a priori from the interview guide and emergent themes identified from review of the data. To ensure intercoder reliability, 20% of the data were double coded, with discrepancies discussed until consensus was reached. These methods are described in greater detail elsewhere. 11 , 12 Codes assigned to fetal tissue research were consistent across analysis of both datasets. Using data display matrices, overarching themes were identified and are presented below with representative quotes.
Overall, 80 participants met inclusion criteria. One participant did not provide any sociodemographic information and was excluded from the analysis. Our final sample for analysis consisted of 79 pregnant or recently pregnant persons, including 25 from UNC, 42 from JHU, and 12 from MGH ( Table 1 ). Participants ranged from 19 to 45 years of age (mean = 29.7 years) with most in the 25- to 34-year-old age group. Among the 79 participants, 61 percent (n=48) self-identified as Black, 27 percent (n=21) had a college degree or higher, and 39 percent (n=31) were married. The majority of participants (78%) were multigravidas (n=62); 32 percent (n=25) had a history of miscarriage or stillbirth, and 28 percent (n=22) had a history of abortion ( Table 1 ).
Sociodemographic and Reproductive Health Characteristics of Participants
Most (72%) of the participants were generally supportive of fetal tissue research and said it should be allowed ( Table 2 ); 3% were supportive but only if a small tissue sample was used for fetal tissue research. A minority (13%) of participants were unsure if they supported fetal tissue research and said their answer would depend on the circumstances. A small proportion (8%) opposed fetal tissue research entirely.
Participants Overall Views on Fetal Tissue Donation for Research
Three cross-cutting themes were identified in the data: choice, respect, and meaning. These cross-cutting themes arose across participant responses independent of their views of fetal tissue research. Each theme is discussed in further detail below.
When reflecting on fetal tissue research, many participants described the highly personal nature of decisions surrounding donation of fetal tissue and emphasized the pregnant person’s choice as a critical aspect of the discussion. Some respondents focused on the importance of promoting autonomy and recognized each pregnant person has their own needs, values, and levels of comfort when it comes to the decision of donating fetal tissue.
“I think it’s okay if the person is comfortable with that type of decision.” -Age 31 years, Black
When asked about their own personal willingness to participate in fetal tissue research, many participants felt that choice was crucial.
“I would participate. If it was a choice; if it were my choice.” -Age 36 years, Hispanic
Many participants discussed factors that would inform their choice to participate or oppose fetal tissue research. Several respondents noted that advancing the scientific body of knowledge was a motivating factor for considering donating their fetal tissue donation to research. Other participants cited religious beliefs as the primary reasons why they would not choose to participate in fetal tissue donation. Even among participants who were supportive of fetal tissue research, many discussed the highly personal nature of the decision and acknowledged the difficulty of making that choice for others.
“I think it’s a very personal decision and so I don’t think I can answer for other women.” -Age 36 years, White
In discussions surrounding choice and autonomy in the context of fetal tissue donation and research, many respondents highlighted the importance of informed consent for research participation.
“I think—as long as the mother is fine with it and has given consent—then yes.” -Age 36 years, White
Many participants also felt it was important to ensure the informed consent process was noncoercive such that pregnant individuals always had the option to decline.
“I think that if they do have the abortion or if they do have a miscarriage then they have the right to consent. If that’s what they want. Women get to consent or say no if they don’t want to.” -Age 23 years, Hispanic
Many participants described respect as a primary consideration shaping their views on the practice and processes of fetal tissue research and donation. Participants highlighted the importance of showing respect for pregnant individuals’ emotions, noting that people experience pregnancy loss or termination differently, depending on the unique circumstances of the pregnancy and their life context.
“I feel like abortion is very emotional, but I feel like miscarriage is very, very emotional. It changes a person. It would be really inconsiderate if a woman had just miscarried, and they just removed her fetus to get her consent for a study.” -Age 19 years, Black
Other respondents discussed the need for a respectful and sensitive approach when obtaining informed consent for fetal tissue donation, specifically surrounding the timing and circumstances of the pregnancy loss or termination.
“If she consents to it, but I also do think it’s a factor as well how soon you seek that consent because I think if it’s maybe too soon after, especially if it’s a miscarriage like it was in my case; probably not if it’s a miscarriage because that could be really, really traumatizing, but possibly with an abortion.” - Age 33 years, Black
Whereas some participants focused on respecting the patient’s experience, others raised questions about what it means to respectfully handle fetal tissue. For some participants, respect motivated them towards fetal tissue donation for research, as they felt the tissue would have been discarded otherwise, and they would have preferred it be used to make a meaningful contribution.
“What are we going to do with it? Nothing…We’re going to toss it. Why toss it when someone can use it to fix someone else’s life?” -Age 23 years, Black
One participant raised questions about how the fetal remains are sampled, expressing a desire to maintain the integrity of the tissue.
“If somebody wants to take a piece of my child, how much are they taking?… If they’re taking an arm, and they’re dissecting my baby—is it just a piece of skin? Is it a sample of blood? I would be mutilating, dissecting a child… I think it’s really disrespectful, but if it’s just taking samples of blood or a piece of skin, I don’t see why not. As long as you can tell it’s a child still, why not?” -Age 36 years, Hispanic
For some participants who opposed fetal tissue donation, they expressed a desire for the tissue to be left alone entirely.
“I’m going to say no because the baby already dead and gone and need to rest.” -Age 20 years, Black
One participant who opposed fetal tissue donation discussed the notion of respecting the fetal tissue in the context of rituals and burial ceremonies after pregnancy loss.
“In the case of miscarriage, I think that my miscarriages occurred at home, except for when I lost my son at 22 weeks. And they did ask if I was willing to donate his remains and I told them, ‘Hell, no. I’m going to have a service and bury my son.’” - Age 37 years, Black
Participants verbalized a range of views about how making meaning after reproductive loss or termination would influence their views and decision about fetal tissue research. The circumstances of the pregnancy—whether it was a spontaneous or induced abortion— shaped responses on meaning, and personal donation intentions in complex and varied ways. Respondents expressed many views on what the fetal remains personally meant to them, with some respondents referring to it as “a loss,” while others used the terms “baby” and “child” to describe the tissue.
“I want to help other women… I lost my baby, so I’m going to give it to research.” -Age 23 years, Hispanic
Further, some participants felt it was important to ensure the loss was not senseless, discussing how donating fetal tissue was a way of giving purpose and meaning to the pregnancy.
“At least you knew the child didn’t go in vain and something good could come out of it.” -Age 32 years, Black
Some participants anticipated that donating fetal tissue after a miscarriage would be helpful for their grief, representing an altruistic way of turning their reproductive loss into something positive and meaningful.
“Some people might think like me and think, it was a loss but maybe I can benefit somebody through this. Make something negative positive.” -Age 19 years, Black
When discussing how fetal tissue donation would be comforting and helpful as a way of ascribing meaning after reproductive loss, some participants drew comparisons to the organ donation process.
“I actually had a miscarriage, and it’s a very sad process, but if you could use it as a benefit, at the end of the day, if someone died and you gave the organs away, I think it’s always a positive to have more research or to benefit someone else.” -Age 26 years, White
Some respondents who supported fetal tissue donation discussed hypothetical grief from pregnancy loss and desire to make meaning by helping other mothers.
“I can see the benefit because I’m going through this loss and I know what it’s like to suffer a great loss. Why would I want another mother— who I can help—to go through that?” -Age 37 years, Black
While some participants evoked the importance of meaning in the context of spontaneous abortion, finding meaning through fetal tissue donation for research was also described in the context of an induced abortion:
“If I was approached with that, at the time when I had a termination, I would have done it… it will help future women. And it’s no risk, it’s nothing for me.” -Age 36 years, Black
Among our sample of pregnant or recently pregnant individuals, most (72%) were generally supportive of fetal tissue research, consistent with existing literature. One prior study in the United Kingdom reported high support (94%) among women prior to abortion. 26 Our qualitative findings expand this limited literature in highlighting three intersecting themes informing individuals’ views: choice, respect and meaning.
While choice is usually evoked around decisions about whether to continue pregnancy, here choice pertains to disposition of remains after pregnancy termination or loss. Participants viewed choice and informed consent as crucial for fetal tissue research, including timing in breaching the topic and initiating the consent process. Existing regulations on fetal tissue research have stringent requirements for informed consent including parameters for appropriate timing. 6 , 7 Yet while policy discussions about timing center on concerns of inducement, study participants focused more on how such timing could best respect individuals’ emotional state at the time of pregnancy loss or termination.
Participants emphasized respecting fetal tissue, which motivated different donation intentions. Donation intention depended for some on respecting physical integrity of the remains and for others on whether remains would be available to mourn with a burial ceremony, highlighting the widely recognized importance of ritual at the edges of life. However, with pregnancy loss and abortion there are frequently no rituals or burial ceremonies, contrasting those often offered after neonatal death. 19 , 20 Previous research indicates women want information about fetal tissue disposal after abortion, 21 and that many desire a burial ceremony at the time of embryo disposal. 22 Our findings further underscore the importance of handling reproductive remains respectfully after abortion or miscarriage, and that research and respect can go hand in hand.
Participants’ responses invoked a broader discourse about what fetal remains represent. While some described them as tissue, others felt they symbolized a baby or potential child. Public discourse is often framed dichotomously: those supporting fetal tissue research view remains as tissue and those opposing view remains as a baby. Participants offered more nuanced views, with some describing the tissue as a baby also expressing a personal intention to donate.
Although many participants had not personally experienced pregnancy loss or termination, most anticipated needing to make meaning from such experiences, and viewed donation as a means to do so. Positive reframing and constructing meaning can help people process complex emotions after pregnancy termination or loss. 23 , 24 Altruistic motivations for donation may facilitate coping, 25 and reframing may help counter stigma associated with abortion.
Ultimately, our findings suggest that pregnant and recently pregnant individuals find value in the option of fetal tissue donation – for some, not just something they would be willing to do but an option meaningful or valuable to them. Our data highlight that the experience of pregnancy does not conclude with the end of pregnancy. Providing options and honoring individuals’ choices about disposition of fetal remains—including for research donation—is an important if overlooked element of ethical reproductive care, and a relevant consideration for policies and practices around fetal tissue research.
Our study has several limitations. First, only a third of our participants had personal experiences with pregnancy loss or termination. We elicited theoretical views surrounding fetal tissue donation, which may differ from those in practice. Future studies could assess views of individuals following pregnancy termination or loss. Second, we did not explicitly probe differences between fetal tissue donation after miscarriage versus termination, or how views about the pregnancy itself shape donation decisions, as our exploratory study focused on surfacing the range of salient themes. Future research, including quantitative methodologies, may help characterize prevalence and correlates of views, including their relationship to circumstances of loss or termination.
Third, our study population included a larger proportion of individuals living with HIV; participants may have felt more positively inclined toward research that may personally benefit them. Additionally, prior interview questions about controversial topics may have influenced responses. Fourth, our sample was geographically limited. Studying views on fetal tissue research in different regions of the U.S. and internationally might raise other considerations. Fifth, given the sociodemographic characteristics of our population, our findings may not be broadly generalizable, capture the full range of considerations, or characterize how structural issues or other vulnerabilities affect views on or trust in research. Last, it was beyond the scope of our study to assess participants’ views on how to approach informed consent for fetal tissue research and respectfully handle fetal remains. Future studies could employ qualitative and quantitative methods to assess diverse individuals’ specific preferences on these topics.
Fetal tissue research holds promise for development of therapeutics and vaccines. Recent policies have sought to restrict fetal tissue research, prompting public debate about the relative weights of scientific promise and moral peril associated with the use of fetal remains for research. 27 Pregnant individuals’ perspectives suggest a more nuanced calculus— one in which use of fetal remains for research can be viewed as a choice that is both respectful to the fetus and meaningful to the individual whose pregnancy has ended. Our findings expand the range of considerations that should be incorporated into policymaking about the moral acceptability of fetal tissue research, including the lived experiences of childbearing individuals.
Supplemental digital content.
This work was supported by the U.S. National Institutes of Health (R01AI108368 PI: Lyerly). The funders had no role in the preparation, review, or approval of the manuscript, or the decision to submit the manuscript for publication. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Jean Anderson disclosed that they received money from stock in Abbvie, Merck, and Bristol Myers Squibb. They also received honoraria from the International AIDS Society in December 2019. The other authors did not report any potential conflicts of interest.
Each author has confirmed compliance with the journal’s requirements for authorship.