Genetic discrimination still casts a large shadow in 2022

Joly, Yann; Dalpé, Gratien

doi:10.1038/s41431-022-01194-8

Cited by 17 publications

(10 citation statements)

References 7 publications

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“…Most researchers felt that fear of insurance discrimination was a deterrent to genomic research project participation. This is consistent with international studies regarding researchers' perceptions and study participation (Joly & Dalpe, 2022). Half of the researchers surveyed in this study reported that participants had raised concerns about insurance implications, and that the frequency of these concerns being raised was comparable pre‐ and post‐moratorium.…”

Section: Discussionsupporting

confidence: 91%

“…In 2018, a Parliamentary Joint Committee (PJC) inquiry into Australia's life insurance industry concluded that fear of GD was negatively affecting the uptake of genetic testing and participation in research, and recommended that life insurers be urgently prohibited from using genetic test results in underwriting (Parliament of Australia, 2018). The PJC recommended a moratorium, with government oversight, mirroring the UK's approach, where genetic test results cannot be used in any insurance underwriting, with the exception of Huntington's disease results for life cover >£500,000 (925,000 AUD) (Joly & Dalpe, 2022). In 2019, the Financial Services Council (FSC) introduced an industry-led, partial moratorium restricting the use of genetic test results by life insurers (Financial Services Council, 2019a).…”

Section: Introductionmentioning

confidence: 99%

“…Previous studies have shown that fear of genetic discrimination (GD), particularly as it pertains to insurance underwriting, deters participation in genomics research (Joly & Dalpe, 2022). Given the ever advancing, expanding field of genomic research and testing, there is potential for GD concerns to increase among patients and research participants.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance

Yanes,

Blencoe,

Howard

et al. 2024

American J of Med Genetics Pt A

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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.

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Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance

Yanes,

Blencoe,

Howard

et al. 2024

American J of Med Genetics Pt A

View full text Add to dashboard Cite

show abstract

“…Adverse treatment such as employment and insurance, can be prevented to some extent by law or regulation, while social relations, stigmatization, and prejudice, are more subtle and difficult to prove or prevent. Ongoing fears of discrimination are the possibility of re-identifying genetic relatives of the data donor from the database, and the presence of genetic markers of disease within specific population groups, which will be used to stigmatize an already vulnerable population [20]. Although it is beyond the scope of this study, further investigation is needed to explore in detail the perceptions and experiences of those who participate in WGS study.…”

mentioning

confidence: 99%

Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan

Kawata

Nagai

et al. 2022

J Hum Genet

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Whole-genome sequencing (WGS) is being used in research and clinical settings in cancer genomics. Studies show that cancer patients generally have positive attitudes toward tumor profiling tests; however, few works revealed their attitudes toward WGS. This study clarifies the expectations, concerns, and result preferences of cancer patients (CPs), family members (FMs) and general adults (GAs) regarding WGS study in Japan. We conducted an anonymous survey with 1204 CPs, 5968 FMs, and 2915 GAs in 2021. Despite low awareness of the WGS studies, CPs had the highest expectations for it. FMs had a higher level of concern than CPs and GAs; feeling anxious by knowing the results, being treated unfavorably if germline findings were detected. Both the FMs and CPs were highly concerned about the protection of genetic information. CPs preferred results with actionability, however, only half preferred to know germline findings. Given the possibility of detecting variants across multidisciplinary diseases and the long-term continuity of WGS research, a system is needed in which study participants can consult and receive decision-making support at any time according to their needs.

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“…We most not forget that with the vast expansion in genomic testing, happening across the globe and in a variety of settings (clinical, academic, industry et al), there remain real concerns about genetic discrimination. Joly and Dalpe provide a timely commentary on this [16].…”

mentioning

confidence: 99%

The utility of population level genomic research

McNeill

2022

Eur J Hum Genet

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Genetic discrimination still casts a large shadow in 2022

Cited by 17 publications

References 7 publications

Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance

Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance

Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan

The utility of population level genomic research

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