Genetic privacy: orthodoxy or oxymoron?

Sommerville, Ann; English, Veronica

doi:10.1136/jme.25.2.144

Cited by 39 publications

(23 citation statements)

References 4 publications

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“…56 A recent analysis of the current legal situation in USA has also concluded that professionals should encourage but not coerce the sharing of important health risk information by genetic counselling clients with their at-risk relatives. 57 It has been argued that genetic information cannot by its very nature be private and should therefore not be bound by the usual professional codes of respect for confidentiality 15 -with genetic information generated about one individual being treated as essentially familial and therefore to be shared with other family members on a 'joint account' model 58 -although, of course, a case can also be made for genetic information being regarded as the most private information of all. 59 While we all have moral obligations to our kin, not all such obligations are enforced by health professionals.…”

Section: Discussionmentioning

confidence: 99%

“…6,9,10,12 Nondirectiveness has long been held to be a central principle of genetic counselling, 13 despite doubts about whether this is always possible in practice 14 or appropriate to all genetic counselling situations. 15 While disclosure without consent would violate the client's privacy, 16 any steps taken to persuade or encourage a counsellee to disclose information to another family member would clearly amount to directive counselling.…”

Section: Introductionmentioning

confidence: 99%

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Genetic professionals' reports of nondisclosure of genetic risk information within families

Richards²,

et al. 2005

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Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about the circumstances under which professionals may have an obligation, or may be permitted, to pass on personal genetic information about their clients but without their consent to other family members. We report findings from the first prospective study investigating the frequency with which genetics professionals become concerned about the failure of clients to pass on such information to their relatives. In all, 12 UK and two Australian regional genetic services reported such cases over 12 months, including details of actions taken by professionals in response to the clients' failure to disclose information. A total of 65 cases of nondisclosure were reported, representing o1% of the genetic clinic consultations in the collaborating centres during the study period. These included 39 cases of the failure of parents not passing full information to their adult offspring, 22 cases where siblings or other relatives were not given information and four cases where information was withheld from partnersincluding former and prospective partners. Professionals reported clients' reasons for withholding information as complex, more often citing concern and the desire to shield relatives from distress rather than poor family relationships. In most cases, the professionals took further steps to persuade their clients to make a disclosure but in no instance did the professional force a disclosure without the client's consent.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Genetic professionals' reports of nondisclosure of genetic risk information within families

Richards²,

et al. 2005

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show abstract

“…Moreover, the confirmation of hereditary cancer in the family often involves duties to confer information about heredity to other family members, concerns related to the disclosure of the information, and worries for other family members Meiser, 2005;Sommerville and English, 1999;Wilson et al, 2004). Nine out of ten individuals who have undergone genetic testing for HNPCC are satisfied with their decision, but 59% still state that the test result had a significant psychosocial impact on their life (Esplen et al, 2001).…”

Section: Introductionmentioning

confidence: 99%

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Carlsson

Nilbert

2007

Journal of Genetic Counseling

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Hereditary nonpolyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live with knowledge about HNPCC carrier status. We conducted an interview study in order to investigate the perceived impact on life after genetic testing for HNPCC. Three themes emerged; reactions and emotions, family relations, and implications and strategies. The informants referred to experiential knowledge of cancer, information responsibilities, impact on family relations, and coping strategies. Most informants had suspected hereditary cancer, but confirmation hereof was described as an overwhelming experience and often brought about changes in life. We suggest that the importance's identified, e.g. the impact of experiential knowledge and the impact on family relations, should be taken into account during genetic counselling in order to facilitate information spread and prepare family members for the impact that the genetic knowledge may have on life.

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“…10 Others, however, have come down in favour of a broader duty of care including other family members in addition to the patient. 11 The Human…”

Section: Guidelines On Confidentialitymentioning

confidence: 99%

Confidentiality and serious harm in genetics – preserving the confidentiality of one patient and preventing harm to relatives

Lucassen

Parker²

2003

Eur J Hum Genet

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Genetics can pose special challenges to the principle of confidentiality within the health professionalpatient relationship, since genetic information is by its nature both individual and familial. Most professional guidelines allow confidentiality to be broken in rare circumstances, where it will prevent a 'serious', 'imminent' and 'likely' harm. We argue that the types of harms that may result from genetic medicine are particularly diverse. Using clinical examples, we explore ethical issues that arise when balancing individual and family member interests. As genetic testing becomes more widespread, situations will arise where clinicians are faced with a choice between preserving the confidentiality of one patient and preventing harm to another. Professionals need to incorporate the notion of familial implications in their counseling of individuals. Since such dilemmas have been relatively rare in the pre-genetic age, we call for a wider debate on the balance between confidentiality and harm to others.

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Genetic privacy: orthodoxy or oxymoron?

Cited by 39 publications

References 4 publications

Genetic professionals' reports of nondisclosure of genetic risk information within families

Genetic professionals' reports of nondisclosure of genetic risk information within families

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Confidentiality and serious harm in genetics – preserving the confidentiality of one patient and preventing harm to relatives

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