Comparative Approaches to Genetic Discrimination: Chasing Shadows?

Joly, Yann; Feze, Ida Ngueng; Song, Lingqiao; Knoppers, Bartha Maria

doi:10.1016/j.tig.2017.02.002

Cited by 64 publications

(65 citation statements)

References 8 publications

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“…Genetic discrimination in access to insurance has occurred [9,[48][49][50][51] and will likely continue to occur without a more robust approach to governance that also explicitly accounts for genomic testing [52] . At a broader level, the perception of genetic discrimination in insurance is also already having an adverse impact [8,12,13] .…”

Section: Resultsmentioning

confidence: 99%

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

Newson

Tiller

Keogh

et al. 2017

Public Health Genomics

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Background: Regulating the use of genetic information in insurance is an issue of ongoing international debate. In Australia, providers of life and other mutually rated insurance products can request applicants to disclose all results from any genetic test. Insurers can then use this information to adjust premiums and make policy decisions. The Australian Financial Services Council (FSC; an industry body) developed and maintains the relevant industry standard, which was updated in late 2016. Aims/Objective: To review the 2016 FSC Standard in light of relevant research and determine the legitimacy of the Australian regulatory environment regarding use of genetic information by insurers. Results: We identified five concerns arising from the 2016 FSC Standard: (1) use of results obtained from research; (2) the requirement for an applicant to disclose whether they are “considering” a genetic test; (3) failure to account for genome sequencing and other technology developments; (4) limited evidence regarding adverse selection; and (5) the inappropriateness of industry self-regulation. Conclusion: Industry self-regulation of the use of genetic information by life insurers, combined with a lack of government oversight, is inappropriate and threatens to impede the progress of genomic medicine in Australia. At this critical time, Australia requires closer government oversight of the use of genetic information in insurance.

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Section: Resultsmentioning

confidence: 99%

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

Newson

Tiller

Keogh

et al. 2017

Public Health Genomics

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“…For instance, insurance companies could use results on cancer risk as a basis for setting higher premiums [13]. Having anti-discrimination legislation in place, or other means of adequate protection (e.g., restricting access and use of results by insurers [14,15]), can help protect individuals [16].…”

Section: Legal Regulatory and Policy Framework Shouldmentioning

confidence: 99%

Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women’s Cancer: Points to Consider

Lévesque

Kirby²,

Bolt³

et al. 2018

Public Health Genomics

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Background and Objective: Advances in omics open new opportunities for cancer risk prediction and risk-based screening interventions. However, implementation of risk prediction in clinical practice may impact the ethical, legal, and regulatory aspects of current cancer screening programs. In order to support decision-making, we analyzed the ethical, legal, and regulatory issues and developed a set of Points to Consider to support management of these issues. Methods: We analyzed the legal and policy frameworks applicable to breast and cervical cancer screening programs in 7 European countries. We identified the most relevant issues to be considered, and we developed considerations for their management, based on the literature, the legal and policy frameworks, and our experience with similar issues. Results: The considerations focus on five topics: (A) health services planning, (B) information and invitation, (C) consent and data/sample collection, (D) risk calculation and communication of results, and (E) storage of data and residual samples. Conclusion: Current frameworks might not be adequate to implement a risk prediction approach using omics factors due to the different characteristics of such approaches.

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“…Furthermore, some countries such as Australia, India, China, New Zealand, most South American and African countries, and many others, have not enacted specific legislation targeting genomic discrimination (Joly, Feze, Song, & Knoppers, 2017;King et al, 2006). Furthermore, some countries such as Australia, India, China, New Zealand, most South American and African countries, and many others, have not enacted specific legislation targeting genomic discrimination (Joly, Feze, Song, & Knoppers, 2017;King et al, 2006).…”

Section: The Completion Of the Human Genome Project (Hgp) In 2003mentioning

confidence: 99%

“…Hong Kong has used genomic information from volunteers to create facial composites for public interest campaigns, and the Kuwaiti government has introduced a law that would make DNA sample collection mandatory for all citizens, visitors, and permanent residents for contribution to a law enforcement database (Joly et al, 2017). In the United States, GINA does not protect against genomic discrimination within the military or outside the employment or health insurance contexts.…”

Section: The Completion Of the Human Genome Project (Hgp) In 2003mentioning

confidence: 99%

Preventing discrimination based on psychiatric risk biomarkers

Brannan

Foulkes

Lázaro‐Muñoz

2018

American J of Med Genetics Pt B

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Recent studies have identified genomic and nongenomic psychiatric risk biomarkers (PRBs; e.g., genomic variants, blood analytes, gray matter volume). PRBs may soon become a powerful tool for improving psychiatric care and prevention. PRB research and its translation to clinical care, however, may prove to be a double-edged sword. Mental health stigma and discrimination are already widespread, and data caution that biological explanations of psychiatric disorders can exacerbate these stigmatizing attitudes, increasing the desire for social distance and heightening the perceived dangerousness of the patient. As a reaction to the Human Genome Project and historical concerns about eugenics, the international community mobilized to establish legislation to prevent genomic discrimination. But in most countries, these laws are limited to few contexts (e.g., employment, health insurance), and very few countries protect against discrimination based on nongenomic risk biomarkers. Like genomic PRBs, nongenomic PRBs provide information regarding risk for stigmatized psychiatric disorders and have similar-and in some cases greater-predictive value. Numerous large-scale neuroscience and neurogenomics projects are advancing the identification and translation of PRBs. The prospect of PRB-based stigma however, threatens to undermine the potential benefits of this research. Unbridaled by nonexistent or limited PRB anti-discrimination protections, the threat of PRB-based stigma and discrimination may lead many to forego PRB testing, even if shown to have clinical utility. To maximize the clinical and social benefits of PRB-based technologies, educational campaigns should address mental health and PRB stigma, and lawmakers should carefully consider expanding legislation that prohibits PRB-based discrimination.

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Comparative Approaches to Genetic Discrimination: Chasing Shadows?

Cited by 64 publications

References 8 publications

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women’s Cancer: Points to Consider

Preventing discrimination based on psychiatric risk biomarkers

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