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"Tissue Donors - ethics"
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Reproductive donation : practice, policy, and bioethics
\"Reproductive donation is the most contentious area of assisted reproduction. Even within Europe there are wide variations in what is permitted in each country. This multidisciplinary book takes a fresh look at the practices of egg, sperm and embryo donation and surrogacy, bringing together ethical analysis and empirical research. New evidence is offered on aspects of assisted reproduction and the families these create, including non-traditional types. One of the key issues addressed is should children be told of their donor origin? If they do learn the identity of their donor, what kinds of relationships may be forged between families, the donor and other donor sibling families? Should donation involve a gift relationship? Is intra-familial donation too close for comfort? How should we understand the growing trend for 'reproductive tourism'? This lively and informed discussion offers new insights into reproductive donation and the resulting donor families\"--Provided by publisher.
Book
Randomised, Double Blind, Controlled Trial of the Provision of Information about the Benefits of Organ Donation during a Family Donation Conversation
It is unclear how much information should be provided to families of potential organ donors about the benefits of organ donation. Whilst this information is material to the donation decision, it may also be perceived as coercive.
Randomised, double blind, controlled trial in which community members watched one of two videos of a simulated organ donation conversation that differed only in the amount of information provided about the benefits of donation. Participants then completed a questionnaire about the adequacy of the information provided and the degree to which they felt the doctor was trying to convince the family member to say yes to donation.
There was a wide variability in what participants considered was the \"right\" amount of information about organ donation. Those who watched the conversation that included information about the benefits of donation were more likely to feel that the information provided to the family was sufficient. They were more likely to report that the doctor was trying to convince the family member to say yes to donation, yet were no more likely to feel uncomfortable or to feel that the doctor was uncaring or cared more about transplant recipients than he did for the patient and their family.
This study suggests that community members are comfortable with health care staff providing information to family members that may be influential in supporting them to give consent for donation.
Journal Article
Human Tissue in Transplantation and Research
Deficiencies and shortfalls in the supply of human organs for transplantation and human tissue for research generate policy dilemmas across the world and have often given rise to major and deleterious controversies, such as those relating to organ and tissue retention practices following post-mortem examination. They also create an environment in which illegitimate commercial activities flourish. At the same time, patients are denied the therapy they desperately require and researchers are impeded from carrying out vital work into the causes of, and efficacious treatments for, major illnesses and diseases. David Price sets out a clear and integrated legal and policy framework which emanates from the tissue source but protects the interests of donors and relevant professionals through tailored property entitlements, but without presupposing rights to trade in 'original' materials.
eBook
Deceased organ and tissue donation after medical assistance in dying and other conscious and competent donors: guidance for policy
In Canada, organ donation from deceased donors is a common practice that saves or improves the lives of more than nearly 2000 Canadians every year, accounting for more than 3 of 4 of all transplanted organs. Deceased donation is permitted after either neurologic or circulatory determination of death, with the latter accounting for 25% of all organs donated in Canada in 2017.1 The current Canadian guideline recommendations for donation after circulatory determination of death, published in 2006, address the conventional scenario of an unconscious, incapable, critically ill patient not expected to survive the withdrawal of life-sustaining measures. The target audience of this guidance consists of clinicians, organ donation organizations, end-of-life care experts, medical assistance in dying providers and policy-makers. This document is intended to inform policies related to offering organ and tissue donation to patients who have made a decision that will lead to imminent death.
Journal Article
Priority for registered organ donors: unfair discrimination against non-donors?
Priority rules give priority to registered organ donors in the allocation of organs. Such rules might directly discriminate against non-donors or indirectly discriminate against those whose religious commitments prevent them from registering. However, while priority rules may qualify as discriminatory, they are not necessarily wrong for the reasons discrimination is usually thought to be wrong—for reasons related to harm and disrespect. While they can be so for reasons related to problematic mental states and demeaningness, they need not be.
Journal Article
An Official American Thoracic Society/International Society for Heart and Lung Transplantation/Society of Critical Care Medicine/Association of Organ and Procurement Organizations/United Network of Organ Sharing Statement: Ethical and Policy Considerations in Organ Donation after Circulatory Determination of Death
Donation after circulatory determination of death (DCDD) has the potential to increase the number of organs available for transplantation. Because consent and management of potential donors must occur before death, DCDD raises unique ethical and policy issues.
To develop an ethics and health policy statement on adult and pediatric DCDD relevant to critical care and transplantation stakeholders.
A multidisciplinary panel of stakeholders was convened to develop an ethics and health policy statement. The panel consisted of representatives from the American Thoracic Society, Society of Critical Care Medicine, International Society for Heart and Lung Transplantation, Association of Organ Procurement Organizations, and the United Network of Organ Sharing. The panel reviewed the literature, discussed important ethics and health policy considerations, and developed a guiding framework for decision making by stakeholders.
A framework to guide ethics and health policy statement was established, which addressed the consent process, pre- and post mortem interventions, the determination of death, provisions of end-of-life care, and pediatric DCDD.
The information presented in this Statement is based on the current evidence, experience, and clinical rationale. New clinical research and the development and dissemination of new technologies will eventually necessitate an update of this Statement.
Journal Article
Perception of Polish patients with cancer of the ethical and legal issues related to biobank research
Abstract
Background
Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating.
Materials and Methods
To understand patients’ perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer.
Results
While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors’ right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients’ opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence.
Conclusions
Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients’ ethical and moral concerns related to donation and offer resources to help manage these concerns.
This article reports results of a survey conducted to better understand cancer patients’ perception of ethical and legal issues related to biobanks.
Journal Article
Pass the tissue: restoring researcher access to legal human donations
The sensitivity of human tissue and previous instances of misuse have, rightfully, led to the introduction of far-reaching oversight and regulatory mechanisms for accessing, storing and sharing samples. However, these restrictions, in tandem with more broad-based privacy regulations, have had the unintended consequence of obstructing legitimate requests for medical materials. This is of real detriment to ambitions for biomedical research, most notably the precision medicine agenda. As such, this paper makes the case for facilitating authorised researcher access to human tissue and associated data along practical medical ethics lines, detailing how liberating samples from unfit regulations, re-evaluating biobanks, diversifying considerations for donor benefit-risk, future proofing donor consent and flattening hierarchies of donation acceptability equate to a more cohesive and respectful means of managing biological samples and information than is achieved at present.
Journal Article
Research involving the recently deceased: ethics questions that must be answered
Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria—or ‘research involving the recently deceased’—can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor’s legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.
Journal Article
Altruism in Extremis — The Evolving Ethics of Organ Donation
With a clear understanding of his terminal prognosis, W.B. wanted to donate his organs before he died — but the legal and ethical hurdles proved insurmountable. In Canada, where medical assistance in dying is now legal, some patients are able to fulfill this last wish.
Journal Article