Understanding the New Restrictions on Fetal Tissue Research, and Attacks on the Scientists Who Use It
By Michael Halperin, Union of Concerned Scientists
Health and Human Services Secretary Alex Azar has announced new restrictions on the use of fetal tissue in research. Fetal tissue research has led to profound progress in understanding and treating countless diseases and public health threats, including chicken pox, HIV, Alzheimer’s, Zika, and Parkinson’s disease.
If you want to understand the consequences of these new restrictions, the toxic and skewed discussion around the use of fetal tissue in research, and the negative consequences for individual scientists and their work, here are some good places to start.
First, critical fetal tissue research can be and is done ethically.
“There is strong evidence that scientific benefits come from fetal tissue research, [which] can be done with [an] ethical framework,” evangelical Christian and NIH Director Francis Collins said in late 2018. There is no evidence that fetal tissue procurement has any impact on abortion frequency.
Second, there is currently no substitute for fetal tissue in research.
According to Science, Dr. Collins also told reporters that “[T]here are certain areas where it’s hard to imagine that we would know what we know without the access to fetal tissue,” such as work on how the Zika virus infects brain cells and causes microcephaly in utero.
Mice models created with fetal tissue implants are considered the “gold standard” model organism for studying the long-term effects of a drug or the progression of a disease. These model organisms are essential for studying how HIV affects human immune cells. According to NIH Associate Director for Science Policy Carrie Wolinetz, there are no good alternatives currently available for developing human immune systems in mice without using human fetal tissue.
“The consensus is that there are certain things about fetal tissue that make [it] unique,” UC Davis Professor Paul Knoepfler told StatNews. “Certain experiments can really only be done on actual fetal tissue.”
Although the NIH is currently funding efforts to find alternatives to fetal tissue, NIH officials told Time Magazine that “the intent was never to cause research to stop,” and an HHS spokesperson told STAT that “by no means was [the review] meant to halt or ban or cease research.”
Equity Forward also has a helpful backgrounder on the importance of fetal tissue for understanding and combating disease and the political context that is driving the new restrictions.
Third, fetal tissue researchers have been under threat for years.
Many researchers will not speak publicly about their work because they have received threats or fear threats. Most universities and university associations refuse to speak openly about this type of research because they are justifiably concerned about safety. Some scientists have resorted to hiring guards for their labs.
We live in a world where misinformation easily proliferates on contentious issues. In 2015, doctored videos that erroneously suggested Planned Parenthood was selling fetal tissue were used as justification for a congressional Select Committee on Infant Lives, a 15-month McCarthy-style boondoggle led by then-Representative Marsha Blackburn of Tennessee, who has since been elected to the US Senate.
Blackburn’s committee issued subpoenas to scientists around the country, including to medical doctor Eugene Gu. Dr. Gu’s fetal tissue research was designed to save the lives of infants who are born with non-functioning heart ventricles or missing kidneys. The committee sent armed US marshals to bang on his door to demand access to documents related to his work.
“I’m a very ordinary, small individual,” Dr. Gu told Science Friday. “I’m not a professor. I don’t have tenure at a university. When I was subpoenaed, I was an intern surgical resident basically making minimum wage. I couldn’t even afford an attorney.”
Dr. Gu was railroaded out of that surgical residency at Vanderbilt University (also in Tennessee) once he began speaking publicly about the harassment he faced. Dr. Gu told Science Friday that Vanderbilt attempted to cancel his appearance on the show.
Fourth, threats and restrictions slow down research.
As Emily Crockett wrote for Vox in 2016:
“Researchers have testified before the select panel that promising studies of diseases like multiple sclerosis have been delayed due to threats and political pressure.
That’s partly because those threats and political pressure are causing the supply of fetal tissue to dry up. Some abortion providers and tissue procurement companies have abandoned fetal tissue donation entirely — and not that many of them were even doing it in the first place.”
“The fetal tissue research subpoena, demanding the names of anyone remotely involved in the research not only in the procurement of the tissue, is a direct attack on the scientific enterprise,” wrote my former colleague Pallavi Phartiyal in 2016. “It interferes with the ability of scientists to advance research on debilitating diseases, utilizing the most useful methodologies and research materials. [It] has the potential of dissuading a whole generation of early career scientists from entering controversial [fields] if they feel that they’d need to defend their science every time there’s a member of Congress who doesn’t deem their scientific methods appropriate or finds their results disagreeable.”
Ultimately, a severely skewed representation of the ethics and benefits of fetal tissue research is depriving all of us from research that can literally save us and our loved ones from disease. This is both irresponsible and sad.