DILEMMAS OF ANONYMOUS PREDICTIVE TESTING FOR HUNTINGTON DISEASE - PRIVACY VS OPTIMAL CARE

Some persons at risk for Huntington disease (HD) seek predictive testi ng under the protection of anonymity to reduce the risk of insurance d iscrimination for themselves and their families. While Canadian and Eu ropean health care systems seem to limit insurance discrimination to l ife and disability insurance, U.S. residents do not have national heal th insurance and are concerned about health insurance discrimination. Two persons residing outside Canada requested predictive testing anony mously. Their primary reason for doing so was to avoid the risks of me dical insurance discrimination, After a detailed preparatory session a nd agreement to counselling and to receipt of results in person, we ag reed to provide anonymous testing to these persons. One participant, w hose psychological assessment was unremarkable, coped well with the pr edictive testing process and did not have the CAG expansion. The other participant had considerable emotional problems prior to testing, whi ch necesitated postponement of discussion of results and referral for psychiatric assessment and support, Both participants had difficulty m aintaining anonymity. The provision of anonymous predictive testing ra ises several problems. With anonymous testing, clinicians cooperate wi th participants to exclude insurance companies from information, This may invalidate the contract with insurance companies. A policy respons e by insurance companies or a universal health care system to protect individuals is preferable, Individuals who request anonymous testing m ay be precisely those most vulnerable and in need of additional suppor t and counselling. However, the preservation of anonymity is a burden to participants and may frustrate the clinicians' ability to establish rapport in counselling and to provide appropriate follow-up typically available through genetic counselling in predictive testing programs. (C) 1997 Wiley-Liss, Inc.