Genetic Discrimination: International Perspectives

Abstract

Genetic discrimination (GD) is a complex, multifaceted ethical, psychosocial, and legal phenomenon. It is defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. This article presents an overview of GD within the contemporary international context. It describes the concept of GD and its contextual features, reviews research evidence regarding people's experiences of GD and the impact of GD within a range of domains, and provides an overview of legal and policy responses to GD that have emerged globally. We argue that GD is a significant and internationally established phenomenon that requires multilevel responses to ensure social justice and equitable outcomes for all citizens. Future research should monitor GD and its impacts within the community as well as institutions and should evaluate the effectiveness of legislative, policy, community education, and systemic responses.

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

“…35 Arguably, issues of genetic discrimination play out quite differently for families with hereditary diseases than those in the general population using personalized genomic tests. Instead of concerns that insurers will use genetic information to impose high premiums and deny coverage or employment opportunities, as in the case of hereditary diseases, 36 patients may perceive themselves to be treated differently in their access to various treatments.…”

Genetic discrimination legislation in Canada: moving from rhetoric to real debate

“…Although no legislation exists at the national level that explicitly prohibits genetic discrimination in Canada, it may be that an individual with a genetic predisposition is protected under the Canadian Human Rights Act (article 3) 8 or the Canadian Charter of Rights and Freedoms. 9 Under section 15(1) of the charter, it may be argued that a genetic predisposition could be grounds upon which discrimination is prohibited given previous statements. Such statements have noted that characteristics that are "immutable, difficult to change, or changeable only at unacceptable personal cost" could be prohibited grounds for discrimination.…”

Translating personalized genomic medicine into clinical practice: evidence, values, and health policy

“…One issue that has garnered significant public concern and policy attention relates to the possibility of genetic discrimination; most widely discussed is the use of a person's genetic information against them in an insurance or employment context. Many countries across Europe and the United States have adopted legislation or moratoria to protect their citizens from the misuse of genetic information by third parties, such as insurers and employers (Otlowski et al 2012). Yet, Canada remains the only G8 country without specific protection from genetic discrimination, despite its documented prevalence (Bombard et al 2009.…”

“…Individuals' concern about genetic discrimination can create barriers to access to genetic services that may offer them important therapeutic or management opportunities, and can result in suboptimal care for those who undergo genetic testing under conditions of anonymity or aliases (Bombard et al 2007). For these reasons, many countries adopted genetic non-discrimination legislation or moratoria to protect their citizens primarily in health, life, and disability insurance domains as well as by employers (Otlowski et al 2012), but Canada has not. Recognizing the limited anti-discrimination policy protections and empirical evidence on experiences of genetic discrimination in Canada, we conducted one of Canada's first studies on genetic discrimination, focusing on the barriers faced by people who undergo genetic testing for Huntington's disease (HD), a devastating condition that typically develops in adulthood, affecting muscle coordination and leading to mental decline and behavioral symptoms.…”