Literature DB >> 29806892

Genetic Privacy, Disease Prevention, and the Principle of Rescue.

Madison K Kilbride.   

Abstract

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first-degree relatives-parents, children, and full siblings-are most likely to be affected. This is especially true for genetic mutations-like those in the BRCA1 and BRCA2 genes-that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at-risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients' moral duties to their at-risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients' genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients' most vulnerable relatives are informed of their genetic risks. Patients' duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue-the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn.
© 2018 The Hastings Center.

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Year:  2018        PMID: 29806892      PMCID: PMC7012315          DOI: 10.1002/hast.849

Source DB:  PubMed          Journal:  Hastings Cent Rep        ISSN: 0093-0334            Impact factor:   2.683


  16 in total

1.  Confidentiality and serious harm in genetics - preserving the confidentiality of one patient and preventing harm to relatives.

Authors:  Anneke Lucassen; Michael Parker
Journal:  Eur J Hum Genet       Date:  2004-02       Impact factor: 4.246

2.  Is there a duty to share genetic information?

Authors:  S M Liao
Journal:  J Med Ethics       Date:  2009-05       Impact factor: 2.903

3.  Bentham in a box: technology assessment and health care allocation.

Authors:  A R Jonsen
Journal:  Law Med Health Care       Date:  1986-09

4.  Genetic information and the family: are we our brother's keeper?

Authors:  Bartha Maria Knoppers
Journal:  Trends Biotechnol       Date:  2002-02       Impact factor: 19.536

Review 5.  The family covenant and genetic testing.

Authors:  D J Doukas; J W Berg
Journal:  Am J Bioeth       Date:  2001       Impact factor: 11.229

Review 6.  Disclosure of genetic information within families.

Authors:  Agatha M Gallo; Denise B Angst; Kathleen A Knafl
Journal:  Am J Nurs       Date:  2009-04       Impact factor: 2.220

Review 7.  Communicating genetic information in the family: the familial relationship as the forgotten factor.

Authors:  Roy Gilbar
Journal:  J Med Ethics       Date:  2007-07       Impact factor: 2.903

Review 8.  Hereditary breast and ovarian cancer due to mutations in BRCA1 and BRCA2.

Authors:  Nancie Petrucelli; Mary B Daly; Gerald L Feldman
Journal:  Genet Med       Date:  2010-05       Impact factor: 8.822

Review 9.  Naked bodies, naked genomes: the special (but not exceptional) nature of genomic information.

Authors:  Daniel P Sulmasy
Journal:  Genet Med       Date:  2014-09-18       Impact factor: 8.822

10.  'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.

Authors:  Sandi Dheensa; Angela Fenwick; Anneke Lucassen
Journal:  J Med Ethics       Date:  2016-01-07       Impact factor: 2.903

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  1 in total

Review 1.  First Responder to Genomic Information: A Guide for Primary Care Providers.

Authors:  Susanne B Haga
Journal:  Mol Diagn Ther       Date:  2019-08       Impact factor: 4.074

  1 in total

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