This week’s Research Ethics Roundup covers Zika research participants and the lack of follow-up from the researchers, the Henrietta Lacks estate suing over profits on the HeLa cell line, sex bias in neuroscience research, human challenge trials in Britain, and the lack of research on pregnant people.
To Study Zika, They Offered Their Kids. Then They Were Forgotten.
Undark | Mariana Lenharo
In 2016, during the peak of a Zika-associated microcephaly outbreak in Brazil, researchers from the United States and Brazil approached pregnant people and their children in the affected area to participate in several clinical studies on the condition. Most were never contacted by researchers after their participation in the study. Lenharo’s story profiles one participant, a leader in the community of families affected by Zika, who only learned that the study was published via social media; researchers she contacted for more information were largely dismissive of her requests. “We feel diminished. It’s like we were lab rats,” another participant said.
Henrietta Lacks Estate Sues Thermo Fisher over HeLa Cell Line
The Scientist | Catherine Offord
The family of Henrietta Lacks has hired an attorney and is filing a lawsuit against ThermoFisher, a pharmaceutical company that the family claims used her famed HeLa cell line to profit “long after their unethical origins became known,” in the words of author Catherine Offord. According to an NPR report on the topic, the family also plans to require other companies to ask the family permission before they can earn a profit on products using the HeLa line. As it stands, it’s not clear what the chances are of the lawsuit’s success, but according to NPR, similar past suits have typically failed.
Opinion: Neuroscientists Need to Think about Sex (Bias)
The Scientist | Nora Walcott
People assigned female at birth (AFAB people), throughout much of the history of science, have been overlooked and under-studied. Though by some measures the situation is improving—this article cites a 21 percent increase in female representation in studies since 2009—author Nora Wolcott argues that neuroscience still lags behind. More AFAB people are being included in scientific studies but the findings are often not disaggregated by sex, leading to major gaps in our understanding about AFAB bodies. Wolcott argues that this disparity both reflects and exacerbates the long-held myth that AFAB bodies are intrinsically more “variable,” and thus harder to study.
For more on this topic, see PRIM&R’s April 2021 webinar, Now Is No Time to Relax: Why the Global Pandemic Strengthens the Case for Considering Sex as a Biological Variable
Britain Infected Volunteers With the Coronavirus. Why Won’t the U.S.?
The New York Times | Kate Murphy
Earlier in 2021, the UK launched the world’s first (and, to date, only) human challenge trial for COVID-19, in which volunteers are deliberately infected with the virus under controlled circumstances. On the occasion of that study’s completion, writer Kate Murphy argues that it’s time for the United States to launch its own version of the ethically fraught trial, citing the potentially gained knowledge from these studies (especially with new viral variants) and the relatively low risk of COVID-19 among the young people who would be the trial’s likely recruits. In June of 2020, when discussions of human challenge trials was initially taking off, PRIM&R articulated hesitation on the issue in a blog post, citing the lack of available treatments at the time, which made proper informed consent—of which the communication of risk is a critical component—challenging or, perhaps, impossible. The presence of new, improving treatments for COVID-19 may change the ethical calculus in considering a US human challenge trial.
Why Is Good Medical Advice for Pregnant Women So Hard to Find?
The New York Times Magazine | Kim Tingley
If research on AFAB people in general is scant, as described above, the situation on research involving pregnant people is even more dire. Though the reproductive risks of many foods, drugs, and activities commonly dissuaded for pregnant people are small, according to Annie Drapkin Lyerly, a bioethicist at the University of North Carolina, our lack of research on this population means we simply don’t have enough information to say definitively. The case of acetaminophen, featured in this article and the subject of a new statement in Nature Reviews Endocrinology, is an illustrative example: scientists and physicians who authored and cosigned the statement warned that the “prenatal exposure to [acetaminophen] might alter fetal development, which could increase the risks of some neurodevelopmental, reproductive and urogenital disorders.” However, Tingley argues, this leads to a complicated treatment landscape for those who are pregnant, with relatively little research to point to safe(r) alternatives for common conditions like fever and pain.