Ulysses contracts for the doctor and for the patient

Hansson, Mats; Hakama, Matti

doi:10.1016/j.cct.2010.03.004

Cited by 3 publications

(3 citation statements)

References 18 publications

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“…A slightly different argument to the same conclusion is developed in a paper by Hansson and Hakama who argue that non-exploitative 'Ulysses contracts' restricting withdrawal should be allowed between researchers and research participants, because this promotes the general interests of research participants in the success of research [6]. This justification raises the interesting question of whether part of such a Ulysses contract could be a requirement that the researchers or the sponsors of the research committed to completing the research project and not withdraw from it.…”

Section: Extant Criticisms Of the Right To Withdrawmentioning

confidence: 93%

“…Withdrawal is a cumulative process, and insofar as new recruitment to the biobank is impossible (for instance in 6 I will leave out discussion of whether it is preferable that biobanks are public, private or constituted along fiduciary or charitable trust lines [17], as well as discussion about benefit sharing arrangements. Although the mode of constitution has some linkage with ethics I can see no reason to believe that one of these forms of constitution is necessarily better.…”

Section: Alternative Conceptions Of the Right To Withdrawmentioning

confidence: 99%

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Withdrawing from Research: A Rethink in the Context of Research Biobanks

Holm

2011

Health Care Anal

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It is generally assumed in research ethics that research participants have an unconditional right to withdraw from research without any detriment or reprisal. This paper analyses this right in the context of biobank research and argues that the traditional shape of the right in clinical research can be modified in biobank research without incurring significant ethical cost. The paper falls in three parts. The first part is a brief explication of the philosophical justification of the right to withdraw. The second part presents a number of extant criticisms of the right. And the third and final part argues that although a right to withdraw is crucial in relation to biobank research, such a right has to be specified in a different way to the similar right in relation to clinical research.

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Section: Extant Criticisms Of the Right To Withdrawmentioning

confidence: 93%

Section: Alternative Conceptions Of the Right To Withdrawmentioning

confidence: 99%

Withdrawing from Research: A Rethink in the Context of Research Biobanks

Holm

2011

Health Care Anal

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“…Hakama [18] have taken this even further suggesting that the attending physician should hand over the role of giving information, delegating the consent process and all future communication regarding participation in the trial to an independent representative of the trial. However, this extreme approach may not be practical, as often the principal investigator is the expert in the field who can answer the questions of the family more effectively than other team members.…”

Section: Coercionmentioning

confidence: 99%

Informed Consent in Pediatric Research

Leibson

Koren

2014

Pediatr Drugs

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Pediatric drug research is gradually becoming more and more accepted as the norm for assessing whether a drug is safe and efficacious for infants and children. The process of informed consent and assent for these trials presents a major challenge. The aim of this review is to map historical, ethical and legal aspects relevant to the challenges of informed consent in the setting of pediatric drug research. The impact of age, level of maturity and life circumstances on the process of obtaining informed consent as well as the relations between consent and assent are discussed. There appears to be a lack of regulatory clarity in the area of pediatric clinical trials; while numerous statements have been made regarding children's rights to autonomy and their ability to care for themselves and for younger ones, the ever changing status of adolescence is still difficult to translate to informed consent. This may delay scientific and clinical advancement for children who are at the very junction of being independent and not needing parental permission. Obtaining consent and assent for pediatric clinical trials is a delicate matter, as both parent and child need to agree to participate. The appropriate transfer of information to guardians and the children, especially concerning potential risks and benefits, is at the heart of informed consent, as it serves to protect both patient and physician. As many adults lack health literacy, one must ensure that guardians receive relevant information at a level and in forms they can understand regarding the trials their children are asked to participate in. Key PointsThe appropriate transfer of information to guardians and the children, especially concerning potential risks and benefits, is at the heart of informed consent, as it serves to protect both patient and physician.There is compelling evidence that most children younger than 9 years of age lack the capacity to consent for participation in clinical trials.In some jurisdictions, institutional review boards approve the participation in drug research of healthy volunteering children during early adolescence.

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Withdrawal from Biobank Research: Considerations and the Way Forward

Hug

Hermerén

Johansson

2012

Stem Cell Rev and Rep

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The right to withdraw one's consent after having agreed to participate in research is a fundamental principle in contemporary research ethics. However, it has been questioned whether this right should apply to research conducted on donated biological samples, including stem cells and tissues from which stem cells can be derived. In this article we present some of the concerns that have been expressed related to this question. We then identify five areas that one needs to pay greater attention to before any conclusions can be drawn as to whether donors should be given the right to withdraw, or under what circumstances withdrawal should be allowed.

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Ulysses contracts for the doctor and for the patient

Cited by 3 publications

References 18 publications

Withdrawing from Research: A Rethink in the Context of Research Biobanks

Withdrawing from Research: A Rethink in the Context of Research Biobanks

Informed Consent in Pediatric Research

Withdrawal from Biobank Research: Considerations and the Way Forward

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