Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries

@article{BlislePipon2019GeneticTI,
  title={Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries},
  author={Jean-Christophe B{\'e}lisle-Pipon and Effy Vayena and Robert C. Green and Ivan Glenn Cohen},
  journal={Nature Medicine},
  year={2019},
  pages={1-7}
}
While genetic testing may be the gateway to the future of medicine, it also poses challenges for individuals, especially in terms of differentiated treatments on the basis of their genetic characteristics. The fear of unwanted disclosure to insurers and the possibility of genetic discrimination can hamper the recruitment of individuals for clinical research that involves genetic testing. Precision medicine initiatives, such as All of Us, are proliferating in the United States. In order to… 

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References

SHOWING 1-10 OF 43 REFERENCES

Genetic discrimination and life insurance: a systematic review of the evidence

A systematic, critical review of over 20 years of genetic discrimination studies in the context of life insurance finds that important methodological limitations and inconsistencies among the studies considered make it extremely difficult, at the moment, to justify policy action taken on the basis of evidence alone.

Should Australia Ban the Use of Genetic Test Results in Life Insurance?

It is argued a moratorium on the use of genetic information by life insurers should be enacted while appropriate longer term policy is determined and implemented while public trust and engagement are critical for successful implementation.

Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers

Concerns about genetic discrimination and the need for better communication tools in the clinical setting may be transferable to the broader Canadian context.

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

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.

Genetic Discrimination and Health Insurance: An Urgent Need for Reform

The accelerated pace of gene discovery and molecular medicine portend a future in which information about a plethora of disease genes can be readily obtained, and so does the potential for discrimination in health insurance coverage for an ever increasing number of Americans.

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

It is suggested that fears of discrimination have to be situated in the broader social and life-course context of family and kin, and the processes in which families developed meaningful interpretations of genetic discrimination and how these interpretations affected family members’ decisions to undergo genetic testing are described.

Health and genetic ancestry testing: time to bridge the gap

This work highlights the recent and unremarked upon emergence of biomedical studies linking markers of genetic ancestry to disease risks, and shows that this body of scientific research is becoming part of public discourse connecting ancestry and health.

Tensions in ethics and policy created by National Precision Medicine Programs

This paper considers national precision medicine schemes from the USA, the UK, and Japan, comparing how these challenges manifest in each national context and examining the range of approaches deployed to mitigate the potential undesirable social consequences.

GINA at Ten and the Future of Genetic Nondiscrimination Law.

It is reasonable to start thinking about the necessity, wisdom, and feasibility of amending GINA or enacting new legislation to address unresolved or emerging issues of genetic discrimination and trends in genetics, genomics, precision medicine, and related technologies.

The personal and clinical utility of polygenic risk scores

The authors review recent studies that have demonstrated the utility of polygenic risk scores for disease risk stratification and their potential impact on early disease detection, prevention, therapeutic intervention and life planning.