This month’s Research Ethics Roundup covers public trust in data sharing, geographical equity efforts, income-based study attrition, and problems with genetic ancestry categories.
People want trustworthy researchers to have better access to their data. But only if they’re told about it.
Health and Research Data UK
A recent paper from the United-Kingdom based public dialogue program found that the public (in that country, at least) do support the sharing of data, even if it’s sensitive, on the condition that the researchers have demonstrated that they can be trusted and that the data owners are told about it. Participants were surprised by how difficult it was for researchers to obtain and use data, and that that delay should be reduced so that the research may produce benefits more quickly.
New NSF program hopes to rev the nation’s ‘engines’ of innovation
Science | Jeffrey Mervis
Promising biomedical research initiatives, which are often spun out of major research universities, are often funneled into traditional biomedical hotspots like Cambridge, MA, Silicon Valley, and the North Carolina research triangle. This concentration threatens geographic diversity and equity in biomedicine, which a new NSF grant seeks to fix by funding biomedical endeavors in regions outside the traditional hubs and “without well-established innovation ecosystems.”
Financial strain may explain attrition for some patients in clinical trials
Cardiology Today | Scott Buzby
A recent study published in Circulation: Cardiovascular Quality and Outcomes found that financial strain likely has a significant impact on participants’ ability to remain enrolled in cardiology clinical trials. The finding is notable in that they held up even when controlling for the race and gender of participants studied. The study authors suggested that “trial representation is more than surface deep. Diverse representation in trial enrollment must closely be followed by equity in trial completion.”
Substituting genetic ancestry for race in research? Not so fast
Publication | Anna C.F. Lewis
This opinion piece suggests that science using genetic ancestry in place of race—the latter of which has no biological basis, hence recent support for the former—threatens “perpetuating the same problems.” Lewis calls for a nuanced understanding of genetic ancestry, including moving away from continental and other sociopolitical categories for grouping data points and recognizing that “there are no distinct categories of genetic variability, only blurred continuities” in genetic datasets