Poster 2: Genetic Discrimination of Individuals at Risk of Huntington's Disease: Further Analysis of the RESPOND-HD Data From Australia (Site 144)

Abstract

We secured a grant from the Legal Services Board of Victoria to fund a follow-on project from RESPOND-HD to analyze and explore the Australian experience of genetic discrimination (GD), using HD as a case model. The objectives are 1) improving knowledge of laws related to GD, 2) improved legal services, and 3) development of easily accessible resources (brochure, website) informing consumers of their rights. Results Of 60 participants (65% female; 35% male; 60% HD gene positive; 40% gene negative), aged between 20 and 69 years, 32% reported experiencing GD, with mean number of incidences 3.17 (±3.35). Participants experienced discrimination in employment, social, and insurance domains. For example, 17% of respondents had been refused insurance coverage, 20% offered coverage only at a higher premium, 55% told because of family history they could get only limited coverage, and 36% told that due to test results they could get only limited coverage. Responses to Discrimination 1 Action—getting involved in activities 2 Inaction—do nothing, react with positivity, feel surprised by discrimination 3 Involvement—information provision, research involvement 4 Advice—regarding event or potential for event 5 Advocacy—to reduce stereotyping, providing education Awareness of Legislation Victoria's anti-discrimination laws are contained in the Equal Opportunity Act 1995, Disability Discrimination Act 1992, and Human Rights and Equal Opportunity Commission Act 1986. Regarding GD, 17% of participants knew where to make a complaint; 27% knew of laws preventing employers from unfairly using genetic information; 15% knew of laws preventing health insurance companies from accessing or requiring genetic information about an insured person; and 10% knew of laws preventing these companies from using genetic information to deny insurance. We aim to increase these percentages. We are funded to hold focus groups to discuss results and clarify issues with several cohorts (gene-negative participants, gene-positive participants, family members, case workers, health professionals, and researchers), and also for a public launch of the above-mentioned resources.