Tag: biobanks

Bioethics Blogs

Biobanks as Konwledge Institutions

Biobanks as Knowledge Institutions “Global Genes –Local Concerns” Seminar with Prof. Michael Madison (University of Pittsburgh, U.S.) Join us at the University of Copenhagen on November 3rd, 2017 to discuss the legal implications of “Biobanks as Knowledge Institutions” with Professor … Continue reading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Consent based on trust rather than information?

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

I think it is important to highlight trust as a dimension of consent to research participation. Consent based on trust need not be morally inferior to consent based on careful study of information.

However, I get puzzled over the tendency to speak of trust-based consent as almost a separate form of consent, next to informed consent. That researchers consider ethical aspects of planned research and tell about them seems to be a concrete way of manifesting responsibility, respect and trustworthiness.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Stem cells: unique biobank material?

Stem cells are perhaps not what first springs to mind as biobank material. Yet, even stem cells can be biobank material and there are biobanks that focus on stem cells. The use of this biobank material, however, has some unique features.

Stem cell researchers process not only data from human material. The material itself is “processed” and sometimes transplanted to research participants. Commercializing stem cell research moreover implies that cells derived from donated human tissue appear in products on a market. This gives rise to ethical and legal questions.

Does the law allow patenting cell lines derived from human donated material? Is buying and selling such material lawful? Another issue concerns research participants’ right to withdraw their consent at any time. Human embryonic stem cell research uses stem cells from donated spare embryos from IVF treatment. How far does embryo donors’ right to withdraw consent stretch? Must transplanted devices with matured cells be removed from research participants, if the embryo donor withdraws consent? Moreover, assuming that researchers share stem cell lines with companies, are these companies willing to invest in the development of stem cell products if embryo donors may withdraw their consent at any time?

Another difficulty is the purpose to which embryo donors are asked to consent. According to the law, human embryos can be donated only for research purposes (or to other IVF patients). Yet, medical research loses its meaning if results cannot be commercialized. It cannot then reach patients. It is important to inform donors about this broader context of embryo donation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – December 2016, Part I by Livia Garofalo

Here is the first part of our December article roundup. Three journals have special issues this month (abstracts in the post below):

Enjoy reading (and what’s left of the holidays)!

American Anthropologist

The Contingency of Humanitarianism: Moral Authority in an African HIV Clinic

Betsey Behr Brada

One consequence of the recent expansion of anthropological interest in humanitarianism is the seeming obviousness and conceptual stability of “humanitarianism” itself. In this article, I argue that, rather than being a stable concept and easily recognizable phenomenon, humanitarianism only becomes apparent in relation to other categories. In short, humanitarianism is contingent: it depends on circumstance and varies from one context to another. Furthermore, its perceptibility rests on individuals’ capacity to mobilize categorical similarities and distinctions. One cannot call a thing or person “humanitarian” without denying the humanitarian character of someone or something else. Drawing on research conducted in clinical spaces where Botswana’s national HIV treatment program and private US institutions overlapped, I examine the processes by which individuals claimed people, spaces, and practices as humanitarian, the contrasts they drew to make these claims, and the moral positions they attempted to occupy in the process. More than questions of mere terminology, these processes of categorization and contradistinction serve as crucibles for the larger struggles over sovereignty, inequality, and the legacies of colonialism that haunt US-driven global health interventions.

Scripting Dissent: US Abortion Laws, State Power, and the Politics of Scripted Speech

Mara Buchbinder

Abortion laws offer a point of entry for “the state” to intervene in intimate clinical matters.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Residency Opportunity: Brocher Foundation

Residency Opportunity: Brocher Foundation

November 29, 2016

The Brocher Foundation is located on the shores of the Geneva Lake, in Hermance (Geneva – Switzerland). The Brocher Foundation residencies last between one and four months. They give researchers the opportunity to work at the Brocher Centre on projects on the ethical, legal and social implications for humankind of recent medical research and new technologies. Every month a dozen of visiting researchers live and concentrate on their research project at the Foundation.

WHY APPLY?

  • Write a book, articles, an essay, a monograph or your PhD thesis in a peaceful environment
  • Have the opportunity to meet other researchers from different disciplines and countries
  • Have the opportunity to meet experts from numerous International Organizations & Non- Governmental Organizations based in Geneva (WHO, WTO, WIPO, UNHCR, ILO, WMA, ICRC, … )

The Brocher Foundation offers to successful applicants an accommodation in the domain of the Brocher Foundation and work space with all facilities.
Developing a research project involving cooperation with a Swiss university, a European university, a governmental or non- governmental will be considered as an asset.

A researcher can apply with other researchers to work on a collaborative project.

Topics of the Year 2018:

Among the following disciplines: Bioethics, Medical Anthropology, Health Economics, Health Policy, Health Law, Philosophy of Medicine and Health, Medical Humanities, Social Science Perspectives on Health, Medical Ethics, History of medicine.

Proposals of the following topics are notably welcomed: Equitable access to medical care, Biobanks, Biosecurity and Dual Use Dilemmas, Clinical Trials and Research on Human Subjects, Genetic testing and screening, Health Care Reform, Nanotechnology, Neglected diseases, Pandemic planning, Reproductive technology, Stem Cells and Cell Therapy, Organ transplantation, Cyber Health, Neurosciences, Synthetic Biology.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

The Resurrection Project, The New Scientist Cover Story

The Resurrection Project
We can’t stop death, but we can try to reverse it
by Helen Thomson
“We already have small biobanks for storing bones from human donors, as well as tendons, ligaments and stem cells. But with rapid advances in regenerative medicine, there is a growing need for large-scale facilities in which we can store more cryogenically frozen biological material. Stem cells, for instance, are increasingly cryopreserved after being extracted and grown outside the body for use in regenerative therapies. “Beyond the age of 50, it’s harder to isolate stem cells for regenerative medicine,” says Mark Lowdell at University College London. “If I were in my 30s, I would certainly be cryopreserving some bone marrow for future tissue to fix my tennis injuries.” Lowdell will soon do the first transplant of a tissue-engineered larynx created from a donor larynx that has been seeded with cryopreserved stem cells to reduce the risk of rejection.” Read more here.

The post The Resurrection Project, The New Scientist Cover Story appeared first on Global Bioethics Initiative (GBI).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

A New Edition of Medicine, Health Care and Philosophy Is Now Available

May 4, 2016

Medicine, Health Care and Philosophy (vol. 19, no. 1, 2016) is available online by subscription only.

Articles include:

  • “Solicitude: Balancing Compassion and Empowerment in a Relational Ethics of Hope—An Empirical-Ethical Study in Palliative Care” by Erik Olsman, Dick Willems, and Carlo Leget
  • “Reconsidering Kantian Arguments against Organ Selling” by Zumrut Alpinar-Sencan
  • “The Ethical Implications and Religious Significance of Organ Transplantation Payment Systems” by Hunter Jackson Smith
  • “Moral Implications of Obstetric Technologies for Pregnancy and Motherhood” by Susanne Brauer
  • “Child’s Objection to Non-Beneficial Research: Capacity and Distress Based Models” by Marcin Waligora, Joanna Rozynska, and Jan Piasecki
  • “Do We Need a Threshold Conception of Competence?” by Govert den Hartogh
  • “Towards a Genealogy of Pharmacological Practice” by Ricardo Camargo and Nicolas Ried
  • “Two Kinds of Autism: A Comparison of Distinct Understandings of Psychiatric Disease” by Berend Verhoeff
  • “Rethinking Risk Assessment for Emerging Technology First-in-Human Trials” by Anna Genske and Sabrina Engle-Glatter
  • “Forensic Uses of Research Biobanks: Should Donors Be Informed?” by Vilius Dranseika, Jan Piasecki, and Marcin Waligora

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

A New Edition of Bioethics Is Now Available

April 14, 2016

Bioethics (vol. 30, no. 4, 2016) is available online by subscription only.

Articles include:

  • “Humans, Animals and the Scope of Bioethics” by Ruth Chadwick
  • “Opportunities in Reform: Bioethics and Mental Health Ethics” by Arthur Robin Williams
  • “On the Moral Acceptability of Physician-Assisted Dying for Non-Autonomous Psychiatric Patients” by Jukka Varelius
  • “Professional Hubris and its Consequences: Why Organizations of Health-Care Professions Should Not Adopt Ethically Controversial Positions” by Eric Vogelstein
  • “A Trust-Based Pact in Research Biobanks: From Theory to Practice” by Virginia Sanchini, et al.
  • “Avoiding the Personhood Issue: Abortion, Identity, and Marquis’s ‘Future-Like-Ours’ Argument” by Eric Reitan
  • “Should We Reject Donated Organs on Moral Grounds or Permit Allocation Using Non-Medical Criteria? A Qualitative Study” by Greg Moorlock, et al.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals — March 2016, Part I by Anna Zogas

Here is the first installment of articles published in March. There is a special issue of East Asian Science, Technology and Society on “Body and Enhancement Technology,” and I also want to note that there are reviews of several recently published books about disability collected in this month’s Sociology of Health & Illness.

BioSocieties

DSM over time: From legitimisation of authority to hegemony
Katia Romelli, Alessandra Frigerio and Monica Colombo

The proposed revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), has reignited a protracted debate in psychiatry and clinical psychology regarding the criteria used to diagnose and classify mental disorders. Drawing on the concepts of legitimisation and hegemony, the aim of this study is to deconstruct how the authoritativeness of the DSM was discursively constructed, legitimised and consolidated over time. To fulfil this purpose, we combine a critical psychology perspective with critical discourse analysis and adopt a multi-level model of analysis that embraces the notions of genre and repertoire in scientific discourse. The materials were approached considering the following interrelated dimensions: (a) semantic macro-areas; (b) discursive strategies; and (c) linguistic means. The data set is constituted by the Forewords and Introductions of different editions of the DSM, from the DSM-I through to the DSM-5. The analysis highlights the discursive strategies that play an important role in self-legitimisation and the construction of a dominant hegemonic discourse.

Ferreting things out: Biosecurity, pandemic flu and the transformation of experimental systems
Natalie Hannah Porter

At the end of 2011, microbiologists created a scientific and media frenzy by genetically engineering mutant avian flu viruses that transmitted through the air between ferrets, the animal most widely used to model human flu.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Response to Call for Essays: Could DTC Genome Testing Exacerbate Research Inequities?

Editor’s note: This essay responds to an invitation (issued here and here) to submit commentaries on the ethical implications of partnerships between social media companies and biomedical researchers. The invitation is ongoing. 

Last June, the direct-to-consumer genetic testing company 23andMe announced that it had reached the milestone of 1,000,000 genotyped costumers. While the company celebrated this milestone as a “turning point” in genetic testing, we believe it is in fact cause for concern. Our concern is that the growing importance of 23andMe’s database as a resource for research – and recently also a recipient of public funding – will aggravate existing biases in disease research, leading to impoverished knowledge and exacerbated inequalities.

For over a decade, studies have drawn attention to the stark underrepresentation of people of non-European descent in genomic research. Some authors have also criticized the lack of a systematic effort to remedy this. Although several initiatives have attempted to increase population diversity in research-oriented genomic databases, the number of genotyped participants resulting from these programs is still relatively small. The Exome Aggregation Consortium (ExAC), which some geneticists consider to be one of the most useful resources ever for variant assessment thanks to the wide range of ethnic groups represented, currently holds genetic data from around 90,000 people. Moreover, attempts to aggregate datasets from different provenance, as ExAC has done, come with its lot of thorny challenges. One is the amount of labor that is needed to ensure the compatibility of different datasets with a common data model before they can be combined.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.