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- Helgesson, G
(author)
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Autonomy, the Right Not to Know, and the Right to Know Personal Research Results: What Rights Are There, and Who Should Decide about Exceptions?
- 2014
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In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. - : Cambridge University Press (CUP). - 1748-720X. ; 42:1, s. 28-37
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Journal article (peer-reviewed)abstract
- Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents (about 2 percent) did not want to be informed if the study revealed their child had a high risk of developing diabetes. This response was troublesome, not least since the information would concern the child's and not the parents’ health. Our inclination was that there cannot be a right not to know that should be granted without qualifications. Furthermore, other contextual factors, e.g., that parents experienced pressure to participate and felt concern about some of the personal data handled in the study, gave reason to question whether autonomous decisions were made regarding participation. The autonomy of their expressed desire not to know was therefore questionable.
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| 2. |
- Juth, Niklas, 1973
(author)
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The Right Not to Know and the Duty to Tell: The Case of Relatives
- 2014
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In: Journal of Law, Medicine and Ethics. - : Cambridge University Press (CUP). - 1073-1105 .- 1748-720X. ; 42, s. 38-52
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Journal article (peer-reviewed)abstract
- © 2014 American Society of Law, Medicine & Ethics, Inc. Obtaining and sharing genetic information when there is a potential conflict of interest between patients and their relatives give rise to two questions. Do we have a duty to find out our genetic predispositions for disease for the sake of our relatives, or do we have a right to remain ignorant? Do we have a duty to disclose our known genetic predispositions for disease to our relatives? I argue that the answer to both questions is yes, but to a lesser extent than sometimes claimed.
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| 3. |
- Taylor, A, et al.
(author)
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Nonbinding Legal Instruments in Governance for Global Health: Lessons from the Global AIDS Reporting Mechanism
- 2014
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In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. - : Cambridge University Press (CUP). - 1748-720X. ; 42:1, s. 72-87
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Journal article (peer-reviewed)abstract
- In recent debates surrounding World Health Organization (WHO) reform, international lawmaking has received unprecedented attention as a future priority function of the Organization. Although WHO's constitutional lawmaking authority was historically neglected and even resisted by WHO and its Member States until the adoption of its first treaty a decade ago, the widespread consensus in favor of a central role for lawmaking in visions of a reformed WHO reflects the crystallization of contemporary approaches to global health governance. Today it is widely recognized that the trends toward globalization that have restricted the capacity of sovereign states to protect health through unilateral action alone have made innovative mechanisms to promote global cooperation and coordination, including international lawmaking, an essential component of governance of public health.
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