Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications

Laurie, Graeme

doi:10.1111/jlme.12118

Cited by 36 publications

(30 citation statements)

References 35 publications

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“…The public is highly heterogeneous in what genetic information it wants to know [26], and some ethicists argue for a qualified right not to know [27]. Accordingly, patient consent is an important factor with regard to updating or recontacting patients with new genetic information.…”

Section: A Limited Duty To Current Patients For Genetic Updates?mentioning

confidence: 99%

Physicians’ Duty to Recontact and Update Genetic Advice

Stevens

Senner

Marchant³

2017

Per. Med.

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This perspective addresses whether physicians have a duty to recontact former or current patients to update clinical advice based on newly discovered genomic information. Genetic information is unique compared with other medical data in that the underlying data do not appreciably change during the patients’ lifetime, but the clinical significance of that information will continue to evolve. Based on relevant case law and guidelines, there is no general, established legal duty for physicians to affirmatively recontact former or current patients to update clinical advice based on newly discovered genetic information. However, integration of genomics into clinical practice is advancing quickly, and there may be limited, specific situations where a physician may have a duty to provide updated genetic information.

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Section: A Limited Duty To Current Patients For Genetic Updates?mentioning

confidence: 99%

Physicians’ Duty to Recontact and Update Genetic Advice

Stevens

Senner

Marchant³

2017

Per. Med.

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“…While recent bioethical work has challenged the ethical basis of the ‘right not to know’, patients may nevertheless have a psychological interest in not knowing certain information about their health 17 18. Because patients may not want to know that they meet the eligibility requirements for AID—which include, first and foremost, a terminal illness prognosis—physicians should restrict disclosures about AID to patients who have already indicated a willingness to receive information about their prognosis.…”

Section: Who Ought To Be Informed?mentioning

confidence: 99%

Aid-in-dying laws and the physician's duty to inform

Buchbinder

2017

J Med Ethics

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On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient-provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID.

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“…Consistent with this view, Article 5(c) of UNESCO's Declaration on the Human Genome and Human Rights states that “[t]he right of each individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected” (UNESCO 1997). Others have recently argued for the right not to know genomic information in the WGS/WES context not only as a matter of respect for individual autonomy, but also as a matter of privacy, and as an aspect of the clinician's fiduciary duty (Laurie 2014; Lázaro-Muñoz 2014; Wolf et al 2013). The existence of rights to know and not to know genetic information appears to support a menu approach because it would be more sensitive to individual patient preferences to receive or avoid knowledge about particular MAGs.…”

Section: Mag Management In Preventive Genomic Sequencingmentioning

confidence: 99%

Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice

Lázaro‐Muñoz¹,

Conley²,

Davis³

et al. 2015

The American Journal of Bioethics

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Advances in genomics have led to calls for developing population-based preventive genomic sequencing (PGS) programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt-out of the sequencing or analysis of specific genomic conditions (the menu approach) or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale up of PGS will require a menu approach that may seem impractical to some, but which draws its justification from a rich mix of normative, legal, and practical considerations.

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Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications

Cited by 36 publications

References 35 publications

Physicians’ Duty to Recontact and Update Genetic Advice

Physicians’ Duty to Recontact and Update Genetic Advice

Aid-in-dying laws and the physician's duty to inform

Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice

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