Research Ethics Roundup: The implications of publishing the HeLa genome without consent, new guidance on incidental findings, and more!

Do April showers have you stuck indoors? Take a moment to peruse the latest installment of our Research Ethics Roundup. This week’s issue features articles on a wide range of topics, including how history should remember researchers with checkered pasts, why science tends to favor positive results, and much more.

Building public trust in genomic research: In this response to Rebecca Skloot’s op-ed about Henrietta Lacks’ DNA being sequenced and publicized without consent, author Michelle Huckaby Lewis, MD, JD, raises some very interesting and important points about public trust and privacy in genomic research. Of particular concern to Lewis is the possibility of de-identified blood samples—the use of which does not require consent under current regulations—being re-identified through sequencing. She argues that more extensive privacy protections for possibilities such as this are a necessary component of building public trust.

Incidental findings from genome sequencing – nuances and caveats: The American College of Medical Genetics and Genomics recently released a report containing recommendations for the reporting of incidental findings in clinical exome and genome sequencing. This blog post from Scientific American highlights twelve key points from that document, including which genes should be analyzed for mutations when examining a genome, and whether a patient may opt out of notification of incidental findings.

How health research misdirects us: This article from The Atlantic highlights a concerning trend in scientific publishing—namely, that positive results are disproportionately likely to be published. The author cites an incentive structure that rewards positive results, both financially and academically, as a possible explanation. The tendency to overlook negative trial results may lead to a proliferation of false positives that may incorrectly influence medical knowledge.

Of medical giants, accolades and feet of clay: The complex history of Dr. Thomas Parran Jr., which includes both a courageous and largely successful campaign to destigmatize and treat venereal disease, as well as an endorsement of two of the most egregious examples of misconduct in American medical history, has resulted in a thought-provoking debate: Should the scientific community continue to recognize the achievements of those individuals who also participated in unethical research? This question has come to a head as the American Sexually Transmitted Diseases Association considers changing the title of a prestigious, 40-year-old award named for Dr. Parran.


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