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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

Positive Framing of Genetic Studies Can Spark Mistrust Among Underrepresented Groups

Researchers in Human Genetics and Genomics Advances report that how researchers describe genomic studies may alienate potential participants.

Small Study of Gene Editing to Treat Sickle Cell Disease

In a Novartis-sponsored study in the New England Journal of Medicine, researchers found that a CRISPR-Cas9-based treatment targeting promoters of genes encoding fetal hemoglobin could reduce disease symptoms.

Gut Microbiome Changes Appear in Infants Before They Develop Eczema, Study Finds

Researchers report in mSystems that infants experienced an enrichment in Clostridium sensu stricto 1 and Finegoldia and a depletion of Bacteroides before developing eczema.

Acute Myeloid Leukemia Treatment Specificity Enhanced With Stem Cell Editing

A study in Nature suggests epitope editing in donor stem cells prior to bone marrow transplants can stave off toxicity when targeting acute myeloid leukemia with immunotherapy.