The Re-emergence of the Liberal-Communitarian Debate in Bioethics: Exercising Self-Determination and Participation in Biomedical Research

Christensen, Erik

doi:10.1093/jmp/jhs012

Cited by 9 publications

(9 citation statements)

References 31 publications

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“…According to Christensen, [b]iobank research may be seen as a project wherein, through our participation, we confirm our sense of belonging to society, express our social identity, and acknowledge our mutual dependence on each other. 28 Dynamic consent is proposed as a way forward in acknowledging this view. We are concerned, however, about the possibility that it might in practice amount to merely another technical solution for obtaining informed consent rather than a fundamental reconceptualization of research participation.…”

Section: Authentic Participant-centric Initiatives (Pcis)mentioning

confidence: 99%

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research

Johnsson

Eriksson

2016

Bioethics

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Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of 'autonomy' as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles - those of autonomy, integrity and authority - to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other - to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.

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Section: Authentic Participant-centric Initiatives (Pcis)mentioning

confidence: 99%

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research

Johnsson

Eriksson

2016

Bioethics

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“…"Autonomy "is a word derived from the Greek auto (self) and nomos (law, rule, standard), originally expressing the idea of self-government, and which, when applied to the person, refers to the self-determination of making decisions about one's life, including in such areas as health, psycho-physical integrity and social relations 17 . To be autonomous is to have freedom of thought, to be free from internal or external constraints and to be able to choose between the alternatives that are presented [17][18][19][20] .…”

Section: The Respect For Autonomy Principlementioning

confidence: 99%

“…To be autonomous is to have freedom of thought, to be free from internal or external constraints and to be able to choose between the alternatives that are presented [17][18][19][20] .…”

Section: The Respect For Autonomy Principlementioning

confidence: 99%

Processo de tomada de decisão nos cuidados de fim de vida

2015

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This study discusses ethical issues related to decisions about end-of-life care. The decision making process in clinical bioethics was selected as a basis for the study. Additionally, criteria for assessing and adopting positions on end-of-life issues were analyzed, including the necessity of including (or their substitutes), family members and healthcare practitioners in the decision making-process, in an atmosphere where respect for autonomy -with all its nuances and limitations -plays a key role. Keywords: Bioethics. Decision making. Ethics. Terminal care. Medical care. Palliative care. Resumo Processo de tomada de decisão nos cuidados de fim de vidaO presente trabalho discute questões éticas atinentes à tomada de decisão no contexto dos cuidados de fim de vida. Elegeu-se o processo decisório em bioética clínica para tal propósito. Analisam-se, ainda, critérios para a deliberação e o posicionamento ante os problemas relacionados ao fim da vida -os quais devem envolver enfermos (ou seus representantes legais), familiares e profissionais da saúde -, em um âmbito no qual o respeito à autonomia, com todas as suas nuances e limitações, tenha lugar de destaque. Palavras-chave: Bioética. Tomada de decisões. Ética. Assistência terminal. Cuidados médicos. Cuidados paliativos. Resumen Proceso de toma de decisión en los cuidados de fin de vidaEste texto habla de cuestiones éticas relacionadas con la toma de decisiones, dentro del contexto del cuidado de final de vida. El proceso de toma de decisiones en bioética clínica fue seleccionado para este fin. Se analizan, además, criterios para tasar y adoptar posturas en cuestiones de final de vida -los cuales deben implicar a los enfermos (o sus representantes legales), familiares y profesionales de la salud -, en una atmósfera en que el respeto a la autonomía, con todos sus matices y limitaciones, desempeña un papel fundamental. Palabras-clave: Bioética. Toma de decisiones. Ética. Cuidado terminal. Atención médica. Cuidados paliativos.

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“…In each case, those who are able to serve -young men and women who can enlist in the military and those with untreatable disease -should willingly join in efforts to address the danger for the good of us all. Coercion would be limited because the communal standard would encourage people to move in the direction of participation in research [5]. There are countries in which this communitarian ethic is operative and people behave in accord with this expectation.…”

Section: Strategies To Increase Clinical Researchmentioning

confidence: 99%

Recruitment into Clinical Trials: Between Rocks and Hard Places

Trachtman¹

2014

J Clinic Res Bioeth

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The Re-emergence of the Liberal-Communitarian Debate in Bioethics: Exercising Self-Determination and Participation in Biomedical Research

Cited by 9 publications

References 31 publications

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research

Processo de tomada de decisão nos cuidados de fim de vida

Recruitment into Clinical Trials: Between Rocks and Hard Places

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