Impact of genetic testing for Huntington disease on the family system

The psychological impact of DNA predictive testing on asymptomatic individu als at risk for Huntington disease (HD) has received considerable attention since the advent of the procedure in 1993, This study examined the impact of such testing on families from the families' perspective, Individuals asy mptomatic at the time of testing, together with their families, were interv iewed in their homes with a semi-structured interview, Eighteen families wi th a total of 55 individuals participated, Defining the family as the unit of analysis was consistent with Systems Theory that links interactions of i ndividuals, families, and the social environment. Areas of affected family functioning noted by the respondents included: 1) family membership; 2) fam ily patterns of communication; and 3) future care giving concerns as they i nfluenced current relationships, Eighty-one percent of families experienced changes in family membership. Members in 50% of families experienced chang es in patterns of communication, and 56% percent of persons reported change s in current relationships in response to test results and their implicatio ns for future caregiving, The data support the conclusion that genetic test ing is a family, as opposed to an individual, matter and that family involv ement in the decision making process should be strongly encouraged in order to help families adjust. The data imply that families will benefit in pre- test sessions from an examination of their patterns of dealing with illness issues, both past and present. Am. J. Med. Genet. 90:49-59, 2000, (C) 2000 Wiley-Liss, Inc.