The Right Not to Know and the Duty to Know in the Opinion of Family Members of the Patients with Huntington Disease
DOI:
https://doi.org/10.14394/etyka.537Keywords:
genetyka, bioetyka, biotechnologia, nowotwórAbstract
Bioethical discussion on the right not to know and the duty to know one’s genetic risk is mainly representative of the opinions of geneticists and bioethicists. In contrast, the paper explores the lay understanding of those issues presented by the members of the Polish Society of Huntington Disease. Their support for the right to ignorance is founded on the belief that the right to ignorance protects one’s right to genetic privacy and autonomy; respondents also emphasised the negative psychosocial consequences of genetic information. On the other hand, it was said that genetic literacy protects other members of the family and helps to avoid the occurrence of the disease. The results of the study demonstrate a polarisation of attitudes: while one half of the respondents stressed one’s obligations toward other people and the duty to know the risk, others emphasised personal autonomy, freedom of choice, and the right not to know.
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