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Getting Results Back

As part of Genomics Law Report's ongoing series, "What ELSI is New?" Daniel MacArthur considers the issue of whether researchers should return medically relevant, or even just interesting, results to study participants. He says that "in the absence of convincing evidence that disclosure of results causes harm, I would argue that the default position should be that research participants have complete access to their own genetic data if they request it." MacArthur says this is not only an ethical imperative but a move that could improve study recruitment and retention rates by providing a benefit to the participant.

Similarly, 23andMe's Anne Wojcicki says that she is "disappointed" that Kaiser Permanente will not be returning data to the 100,000 participants in its Research Program on Genes, Environment and Health, that will study genetic and environmental factors affecting common diseases. "Kaiser should afford the participants the respect they deserve by allowing them to decide for themselves whether they want to see their own genome," she writes at the Spittoon, expanding on her remarks at the TEDMED meeting.

As the Genomics Law Report points out, Kaiser Permanente's Cathy Schaefer responds at the Robert Wood Johnson Foundation Pioneering Ideas blog that all the participants know when they sign up for the study that their results won't be given back to them. "We also inform participants that if we discover something in their data or samples that may be important to their health, we will contact them to learn if they want to have the information," Schaefer adds. She says they aren't returning full results since the role of some variants in disease isn't fully known and that some results aren't actionable.

The Scan

Boosters Chasing Variants

The New York Times reports that an FDA advisory panel is to weigh updated booster vaccines for COVID-19.

Not Yet

The World Health Organization says monkeypox is not yet a global emergency, the Washington Post reports.

More Proposed for Federal Research

Science reports that US House of Representatives panels are seeking to increase federal research funding.

PLOS Papers on Breast Cancer Metastasis, Left-Sided Cardiac Defects, SARS-CoV-2 Monitoring

In PLOS this week: link between breast cancer metastasis and CLIC4, sequencing analysis of left-sided cardiac defects, and more.