Aideen McInerney‐Leo

Fear of insurance discrimination can inhibit genetic research participation. In 2019, an industry‐led partial moratorium on using genetic results in Australian life insurance underwriting was introduced. This mixed‐methods study used online surveys ( n = 59 participants) and semi‐structured interviews ( n = 22 participants) to capture researchers’ perceptions about the moratorium. 66% ( n = 39/59) were aware of the moratorium before the survey. Of researchers returning genetic results, 56% ( n = 22/39) reported that insurance implications were mentioned in consent forms, but a minority reported updating consent forms post‐moratorium ( n = 13/39, 33%). Most researchers reported that concerns regarding life insurers utilizing research results inhibited recruitment (35/59, 59%), and few perceived that the moratorium positively influenced participation ( n = 9/39, 23%). These findings were supported by qualitative findings which revealed that genetic discrimination concerns were a major issue for some individuals, though these concerns could be eclipsed by the promise of a diagnosis through research participation. The majority thought a regulatory solution should be permanent ( n = 34/51, 67%), have financial limits of at least ≥1,000,000 AUD (37/51, 73%), and involve government oversight/legislation ( n = 44/51, 86%). In an era where an increasing number of research studies involve genomics as a primary or secondary objective, it is crucial that we have regulatory solutions to address participants’ hesitation.