Direct-to-consumer genetic testing: good, bad or benign?

A wide variety of genetic tests are now being marketed and sold in direct-to-consumer (DTC) commercial transactions. However, risk information revealed through many DTC testing services, especially those based on emerging genome wide-association studies, has limited predictive value for consumers. Some commentators contend that tests are being marketed prematurely, while others support rapid translation of genetic research findings to the marketplace. The potential harms and benefits of DTC access to genetic testing are not yet well understood, but some large-scale studies have recently been launched to examine how consumers understand and use genetic risk information. Greater consumer access to genetic tests creates a need for continuing education for health care professionals so they can respond to patients' inquiries about the benefits, risks and limitations of DTC services. Governmental bodies in many jurisdictions are considering options for regulating practices of DTC genetic testing companies, particularly to govern quality of commercial genetic tests and ensure fair and truthful advertising. Intersectoral initiatives involving government regulators, professional bodies and industry are important to facilitate development of standards to govern this rapidly developing area of personalized genomic commerce.

Willingness to pay for genetic testing: a study of attitudes in a Canadian population.

BACKGROUND: This article reports results of a 2008 telephone survey of approximately 1,200 residents of the Province of Alberta, Canada. The majority of respondents reside in urban centers, have some post-secondary education, and report annual family income near or above the Canadian average. The goal was to explore attitudes and interest regarding different types of genetic tests. METHODS: Respondents were asked about their willingness to pay for tests to gain information about genetic factors related to manageable conditions, serious, unpreventable disease, healthy food choices, psychiatric conditions, going bald (asked of men only), and gaining weight. The price categories were CAD 0, CAD 1-499, CAD 500-1,999 and CAD 2,000+. Respondents were also asked about factors that would motivate interest in genetic testing, such as availability of treatment, curiosity, and reproductive decision-making. They were also asked if the public health insurance system should pay for certain types of tests. RESULTS: Across all test categories, few respondents expressed willingness to pay more than CAD 500 out of their own pocket. 62% stated that the public health insurance system should pay for genetic tests for manageable conditions and opinion was divided about whether the government should fund tests for serious, unpreventable conditions and tests to inform healthy eating choices. CONCLUSION: The principal motivator for interest in genetic testing was to learn clinically relevant details to inform health-related decisions. Curiosity about genetic risk had only a modest impact on consumer interest. In general, younger respondents (18-35 years) expressed somewhat greater willingness to pay than older respondents, especially those 65 and older.

Legal rights, constitutional controversies, and access to health care: lessons from Canada.

This paper provides a critical analysis of the use of legal claims to assert rights to access health care. Using Canada's system of public health insurance as an example, the paper discusses two significant Supreme Court of Canada cases in which claimants use legal mechanisms to influence health care reform. While one case seeks to expand the range of services covered by public health insurance, the other challenges the government "monopoly" over health care and advocates an expanded role for private health care. These legal claims play out in an adversarial setting where the focus is on the rights claims advanced by individual litigants. Yet, the outcomes of these cases involve broad implications regarding allocation of scarce health care resources and the very structure of the health care system. This paper discusses the benefits and limits of using legal claims in this context and also considers the role of courts in making decisions that may have the effect of constraining policy options available to government decision-makers.