NCL issues statement on New York Times health article on Alzheimer’s trials
October 29, 2024
Media contact: National Consumers League – Melody Merin, melodym@nclnet.org, 202-207-2831
WASHINGTON, DC – NCL’s Health Director, Robin Strongin, released the following statement regarding Walt Bogdanich and Carson Kessler’s October 23 article, Health Section, New York Times, “What Drugmakers Did Not Tell Volunteers in Alzheimer’s Trials,” which reported that pharmaceutical companies withheld genetic testing information from volunteers in Alzheimer’s trials putting them at risk for brain bleeds.
“Medical research is complex and by its very nature involves risk. For a devastating disease like Alzheimer’s, consumers may be willing to take more of a risk in the hope of finding a treatment or a cure – if not for themselves, then for future generations.
We appreciate that researchers don’t know the full risk of a drug until tested, we are aware that genetic information can lead to certain types of discrimination, and we also understand that standards of care to disclose and not disclose information depend on multi-faceted decision points. Consumers have an absolute right to know what risks they face, including what information may be withheld, so they can make an informed decision before participating in a clinical trial—including when to opt out.
The scientific advances we witness today bring hope. Along with that hope comes the responsibility to be vigilant and assess and reassess what these advances mean for those willing to participate in clinical trials. It is imperative that we balance the integrity of clinical trials with the safety and protection of research participants.
NCL is increasingly concerned about the outsized role private equity plays in the sacred trust relationship between the research subject and the researcher. Institutional Review Boards must strive to regularly revisit their practices to reassure consumers that they, and the institutions in which research is conducted, are ethical and safe and provide all the information necessary to make truly informed decisions. It is never acceptable to put profits before safety. Clinical trials require numerous parties to come together and tackle the most vexing research challenges.
NCL calls upon all of those involved, including journalists, to provide balanced information that genuinely educate, and not terrify, the public. The last thing we want to happen is to further erode the public’s trust in science. We must all work together to safely, and ethically, find cures to dreaded diseases.”
###
About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.