A step forward, but still inadequate: Australian health professionals' views on the genetics and life insurance moratorium

被引:8
|
作者
Tiller, Jane M. [1 ,2 ]
Keogh, Louise A. [3 ]
McInerney-Leo, Aideen M. [4 ]
Belcher, Andrea [5 ,6 ]
Barlow-Stewart, Kristine [7 ]
Boughtwood, Tiffany [2 ,6 ]
Gleeson, Penny [8 ]
Dowling, Grace [1 ]
Prince, Anya [9 ]
Bombard, Yvonne [10 ,11 ]
Joly, Yann [12 ]
Delatycki, Martin [13 ,14 ]
Winship, Ingrid M. [15 ,16 ]
Otlowski, Margaret [17 ]
Lacaze, Paul [1 ]
机构
[1] Monash Univ, Sch Publ Hlth & Prevent Med, Fac Med Nursing & Hlth Sci, Melbourne, Vic 3004, Australia
[2] Murdoch Childrens Res Inst, Parkville, Vic, Australia
[3] Univ Melbourne, Ctr Hlth Equ, Melbourne Sch Populat & Global Hlth, Melbourne, Vic, Australia
[4] Univ Queensland, Human Genom Grp, Diamantina Inst, Woolloongabba, Qld, Australia
[5] Univ Queensland, Fac Med, Herston, Qld, Australia
[6] Australian Genom, Melbourne, Vic, Australia
[7] Univ Sydney, Sydney Med Sch, Sydney, NSW, Australia
[8] Deakin Univ, Sch Law, Burwood, Vic, Australia
[9] Univ Iowa, Coll Law, Iowa City, IA 52242 USA
[10] Univ Toronto, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada
[11] Li Ka Shing Knowledge Inst, Toronto, ON, Canada
[12] McGill Univ, Dept Human Genet, Montreal, PQ, Canada
[13] Murdoch Childrens Res Inst, Melbourne, Vic, Australia
[14] Victorian Clin Genet Serv Ltd, Parkville, Vic, Australia
[15] Royal Melbourne Hosp, Clin Genet, Melbourne, Vic, Australia
[16] Univ Melbourne, Dept Med, Melbourne, Vic, Australia
[17] Univ Tasmania, Fac Law, Hobart, Tas, Australia
基金
英国医学研究理事会;
关键词
ethics; human genetics; public health; genetic counseling; health; DISCRIMINATION; KNOWLEDGE; INFORMATION; PHYSICIANS;
D O I
10.1136/jmedgenet-2021-107989
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Background In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg, $500 000 of death cover). Methods We surveyed Australian health professionals (HPs) who discuss genetic testing with patients, to assess knowledge of the moratorium; reported patient experiences since its commencement; and HP views regarding regulation of genetic discrimination (GD) in Australia. Results Between April and June 2020, 166 eligible HPs responded to the online survey. Of these, 86% were aware of the moratorium, but <50% had attended related training/information sessions. Only 16% answered all knowledge questions correctly, yet 69% believed they had sufficient knowledge to advise patients. Genetics HPs' awareness and knowledge were better than non-genetics HPs' (p<0.05). There was some reported decrease in patients delaying/declining testing after the moratorium's introduction, however, 42% of HPs disagreed that patients were more willing to have testing post-moratorium. Although many (76%) felt the moratorium resolved some GD concerns, most (88%) still have concerns, primarily around self-regulation, financial limits and the moratorium's temporary nature. Almost half (49%) of HPs reported being dissatisfied with the moratorium as a solution to GD. The majority (95%) felt government oversight is required, and 93% felt specific Australian legislation regarding GD is required. Conclusion While the current Australian moratorium is considered a step forward, most HPs believe it falls short of an adequate long-term regulatory solution to GD in life insurance.
引用
收藏
页码:817 / 826
页数:10
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