Genetic Research Results May Warrant Updates to Participants
MONDAY, April 8, 2019 -- In certain cases, research participants should be recontacted to be provided with updates on reinterpretation of variants, according to a position statement published in the April 4 issue of the American Journal of Human Genetics.
Yvonne Bombard, Ph.D., from the American Society of Human Genetics in Rockville, Maryland, and colleagues developed a position statement on the responsibility to recontact research participants to provide updates on reinterpretations of variants after initial analysis and the extent of this responsibility in the context of research and clinical care.
The authors note that in some instances when a researcher finds evidence to support reclassification of a variant according to professional standards, there could be a responsibility to recontact a research participant. In the case of new knowledge learned about a variant that was previously returned to a study participant or a newly identified medically relevant variant, a strong responsibility to recontact participants is limited to situations in which there are adequate resources to support such recontact (e.g., if the research project is ongoing and has active funding). Any participant has the right to decline return of results at the time of recontact.
"While clinical recommendations on this topic have begun to emerge, there is a lack of guidance on the responsibility of researchers to inform participants of reinterpreted results," Bombard said in a statement. "Because the research and clinical contexts have different goals, priorities, timelines, and restrictions, we need to consider them separately."
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Posted: April 2019