Evolving perspectives on genetic discrimination in health insurance among health care providers

Huizenga, Carin R.; Lowstuter, Katrina; Banks, Kimberly C.; Lagos, Veronica I.; Vandergon, Virginia Oberholzer; Weitzel, Jeffrey N.

doi:10.1007/s10689-009-9308-y

Cited by 22 publications

(20 citation statements)

References 22 publications

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“…Genetic profiles of limited clinical validity will not be of interest to insurance companies or employers due to their limited utility for the purposes of risk stratification [68]. Indeed, genetics professionals today generally consider the risk of genetic discrimination to be very low [69]. 12 In spite of widespread concern among ELSI-researchers, we therefore think that the fears of discrimination and stigmatization are not justified in the context of present-day personal genome testing.…”

Section: Discussionmentioning

confidence: 99%

Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

2011

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BackgroundAs genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal utility.'SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility.

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Section: Discussionmentioning

confidence: 99%

Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

2011

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“…These findings are lower than results from studies conducted in the US. For example, in 2003 (before the adoption of GINA) as many as 82 % of NSGC had estimated that such risk was low (Pfeffer et al 2003), whereas a post-GINA survey reported that 94 % of NSGC consider the risk of genetic discrimination to be low or theoretical (Huizenga et al 2010). Thus, it appears that Canadian cancer genetic counselors have greater concerns about their patients’ insurability risk than their American colleagues did before and after the adoption of GINA.…”

Section: Discussionmentioning

confidence: 99%

“…In this role, genetic counselors will have to address the issue of GD in pre-test counseling sessions. Australian and US data support this claim, demonstrating that genetic counselors discuss the possibility of GD with patients (Barlow-Stewart et al 2009; Hall and Rich 2000; Huizenga et al 2010; Wertz 1998–1999). Until now, the content of these discussions in the Canadian context was largely unknown.…”

Section: Introductionmentioning

confidence: 97%

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Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors

Lane¹,

Feze

Joly

2015

Journal of Genetic Counseling

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Genetic discrimination in the context of genetic testing has been identified as a concern for symptomatic and asymptomatic individuals for more than three decades. Genetic counselors are often the health care professionals who discuss risks and benefits of genetic testing with patients, thereby making them most appropriate to address patient concerns about genetics and personal insurance (i.e., life, life as related to mortgage or group insurance, disability, critical illness and travel). A pilot study was conducted to ascertain the current practices of Canadian cancer genetic counselors in regard to their discussions with patients about genetic testing and access to personal insurance. Among the 36 counselors surveyed, 100 % reported discussing the issue of genetic testing and personal insurance with their patients. Several factors influenced the content, depth and length of these discussions including age, cancer status, family members, and patients’ current and future insurance needs. Counselors reported discussing with patients the possible impact of genetic test results on access to personal insurance, possible access and use of patient genetic information by insurance companies, and whom patients should contact if they have additional questions. The most commonly reported inquiries from patients included questions about the possible impact of genetic testing on their ability to obtain insurance, and the insurability of family members. While 28 % of counselors reported having been contacted by an insurer requesting access to patient information, only one counselor was aware of or could recall the outcome of such a request. This pilot study revealed that issues concerning genetics and personal insurance are commonly discussed in Canadian cancer genetic counseling sessions. Counselors furthermore expressed a need for additional educational resources on the topic of genetics and personal insurance for themselves and their patients.

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“…Concerns about risks to privacy and confidentiality of PGT results were consistent with other findings (Bloss et al 2010;McGuire et al 2009). The most prominent fear was that insurance companies would use the test results to deny coverage, as noted elsewhere (Barlow-Stewart et al 2009;Bombard et al 2009;Huizenga et al 2010;Williams et al 2010). These concerns indicate that while participants were interested in gaining PGT information and optimistic about its effects on their motivation for lifestyle changes, they were also fearful of what would happen if third parties gained access to it.…”

Section: Concerns About Testingmentioning

confidence: 98%

Primary Care Patients’ Views, Attitudes, and Decision-Making Factors Regarding Direct-to-Consumer Personal Genome Testing: Results From a Qualitative Study

Wasson

Hogan

Sanders

et al. 2012

AJOB Primary Research

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Background: Direct-to-consumer personal genome testing (PGT) is a relatively new service where thousands to millions of single nucleotide polymorphisms, or common genetic variants, are examined and variable risk estimates for diseases and conditions are given. Such genetic testing is available directly to the public and raises ethical, scientific, regulatory, and clinical issues. Limited empirical research exists about how primary care patients view PGT. The goal of this exploratory study was to assess the attitudes and views, decision-making factors, and ethical considerations of primary care patients about direct-to-consumer PGT. Methods: This qualitative study involved recruiting primary care patients from an urban academic medical center clinic and conducting four focus groups (n = 29). Participants were questioned about their views, attitudes, and decision-making considerations regarding direct-to-consumer PGT. Grounded theory methodology was used to analyze the data for categories that emerged from the focus group discussions. Results: Three primary categories emerged from the data analysis: (I) the worth of direct-to-consumer PGT;(II) motivations for testing; and (III) concerns about testing, including ethical issues. Participants reported that they were motivated to test by a desire for information about themselves and for their families, the potential for intervention and prevention of disease, and altruism. Concerns expressed included questions about the accuracy and reliability of this testing, interpretation of results, anticipated risks of revealing results, and ethical issues including confidentiality. Conclusions: This study describes in detail the decision-making considerations of primary care patients about direct-to-consumer PGT. Participants articulated motivations for and potential benefits of PGT, along with perceived concerns, risks, and ethical issues raised by such testing. The study highlights the need for further examination of whether and how these considerations influence decisions and actions of additional primary care populations.

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Evolving perspectives on genetic discrimination in health insurance among health care providers

Cited by 22 publications

References 22 publications

Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors

Primary Care Patients’ Views, Attitudes, and Decision-Making Factors Regarding Direct-to-Consumer Personal Genome Testing: Results From a Qualitative Study

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