Change in attitudes toward presymptomatic testing in Huntington disease

Mastromauro, Carol A.; Myers, Richard H.; Berkman, Barbara; Opitz, John M.; Reynolds, James F.

doi:10.1002/ajmg.1320240218

Cited by 6 publications

(1 citation statement)

References 3 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In fact, during this period co-operation between the two groups developed, increasing professional understanding of the complex repercussions of the disease on family relationships and the many motives underlying the demand for testing. The increasing number of surveys carried out by the geneticists, again with the assistance of the lay associations, to determine the attitudes and intentiois of at-risk persons and their families with regard to predictive testing (28,29,30,31,32,33,34,35,36,37,38,39,40,41) reflects their growing recognition of the lay viewpoint during this period. A novel orientation of medical genetics for Huntington's Disease emerged from these inquiries.…”

Section: ) Objectives Of Medical Geneticsmentioning

confidence: 99%

Huntington's disease and the ethics of genetic prediction.

Terrenoire

1992

J Med Ethics

View full text Add to dashboard Cite

What ethical justification can be found for informing a person that he or she will later develop a lethal disease for which no therapy is available? This question has been discussed during the past twenty years by specialists concerned with the prevention of Huntington's Disease, an incurable late-onset hereditary disorder. Many of them have played an active role in developing experimental testing programmes for at-risk persons. This paper is based on a corpus of 119 articles; it reviews the development of their reflection and includes an outline of the ethical problems identified and the solutions adopted in pre-clinical protocols. Seen in a broader perspective, the experience of presymptomatic testing for Huntington's Disease has given medical geneticists the opportunity to clarify their ethical position in the as yet little explored field of predictive medicine.

show abstract

Section: ) Objectives Of Medical Geneticsmentioning

confidence: 99%

Huntington's disease and the ethics of genetic prediction.

Terrenoire

1992

J Med Ethics

View full text Add to dashboard Cite

show abstract

Attitudes toward presymptomatic testing in Huntington disease

et al. 1987

Self Cite

View full text Add to dashboard Cite

One hundred thirty-one individuals at 50% risk of inheriting Huntington disease (HD) responded to a survey to study their attitudes toward taking a genetic test based on the identification of a genetically linked DNA polymorphism. Ninety-six percent of the respondents believe that presymptomatic testing should be available, and 66% say they will use it themselves. Fewer married individuals, in comparison to those single, separated, and divorced, intend to take the test. Many respondents (40%) said their primary reason for wanting to be tested is to end the uncertainty in their lives. Results suggest that there will be self-selection in test use, with many individuals who believe they will be depressed or possibly suicidal with a positive test result deciding not to be tested or unsure about testing. However, 15% of those who want to be tested acknowledge that they may be at risk for suicide if they are probable gene carriers. Only 12% of all respondents say they will be likely to use prenatal testing, suggesting that initial demand may be low in New England. Implementation of presymptomatic testing challenges health care providers to develop strategies to care for otherwise healthy persons who will be given a diagnosis years before the onset of illness.

show abstract