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Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information
TLDR
Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—it is argued that generating genetic information and disclosing this information to kin raise different types of ethical issues. Expand
Communication about genetic testing in families of male BRCA1/2 carriers and non‐carriers: patterns, priorities and problems
TLDR
The interviews revealed that both male patients and their partners perceive themselves, rather than health professionals, as responsible for disclosing information about genetic testing and genetic risks to their children. Expand
Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort
TLDR
The data show persistent worry in younger female gene carriers and confirm changes in risk management consistent with carrier status, and men were not adversely affected by genetic testing in terms of their general mental health. Expand
Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family.
TLDR
It is argued that narrative reconstruction enables high risk men to reconcile their genetic identity, self and family and it is observed that carriers and non-carriers mobilised differing explanations about their role in the aetiology of risk. Expand
The Nazi doctors and the Nuremberg Code: human rights in human experimentation
TLDR
This laudable collection of essays does much to dispel the confusion and put the whole episode in a proper perspective for those of us who need to know. Expand
Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up
TLDR
Given the return to pre-test levels of concern among female non-carriers at 3 years and a substantial minority not engaging in recommended screening, there appears to be a need to help some women understand the meaning of their genetic status 3 years post-testing. Expand
Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching.
TLDR
It is concluded that women with cancer who participate in BRCA1 and BRCa2 testing need to receive clear information about the meaning and implications of the different types of test results. Expand
Men’s Decision-Making About Predictive BRCA1/2 Testing: The Role of Family
TLDR
It is demonstrated that mothers of potential mutation carriers not only perceive themselves ashaving a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. Expand
Non-uptake of predictive genetic testing for BRCA1/2 among relatives of known carriers: attributes, cancer worry, and barriers to testing in a multicenter clinical cohort.
TLDR
The findings do not indicate that healthy BRCA1/2 test decliners are a more vulnerable group in terms of cancer worry, however, barriers to testing need to be discussed in genetic counseling. Expand
Genetic Testing for Breast and Ovarian Cancer Predisposition: Cancer Burden and Responsibility
TLDR
It is indicated that experiences of cancer in the family play an important role in formulating beliefs about one’s own risk and motivation for predictive genetic testing among women at increased risk of developing breast and/or ovarian cancer due to their family history. Expand
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