Biobanking and public health: is a human rights approach the tie that binds? (original) (raw)
Related papers
Bioethics and large-scale biobanking: individualistic ethics and collective projects*
Genomics, society and policy, 2005
Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects' rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience of large-scale biobanking, I argue that the focus on consenting individuals distorts our ways of thinking about biobanks and has serious practical ramifications. This becomes clear if we contrast the case of adult biobanks intended for medical research with two other forms of biobanking. Thus child cohort studies-vital for sound scientific investigation of the interplay of genetics and environment in health-have been very badly funded next to adult studies. On the other hand, forensic databases have attracted massive investment, but little debatepartly owing to a sense that here, at least, is a case where consent is not relevant. Contrasting these central types of biobanking, I will suggest that there are powerful factors at work in limiting 'ethics' to individual rights. Projects of this size should direct our attention to more overtly political questions concerning priority setting and organisation of medical research.
Genes, cells, and biobanks: Yes, there’s still a consent problem
PLOS Biology, 2017
From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends-including concerns about commercialization and perceived rights of continuing control ("biorights")-seem likely to intensify these issues.
Biobank research, informed consent and society. Towards a new alliance?
Journal of Epidemiology and Community Health, 2015
With the rise of -omics disciplines and biobank research, personal data and biosamples crossing national borders pose new ethical questions. In this article, informed consent, as originally conceived, is shown as not being sufficient to address aims of research and interests of patients any more. Therefore the author has, after having scrutinised issues in biobanking, sketched a model of dynamic consent and a manner of scrutinising ethical issues through empirical data.
Rethinking the Ethical Principles of Genomic Medicine Services
European Journal of Human Genetics, 2019
Clinical genome and exome sequencing is currently used in only a small fraction of patients, yet large scale genomic initiatives are becoming more embedded in clinical services. This paper examines the ethical principles that should guide regulatory processes regarding consent and data sharing in this context. We argue that a genomic dataset administered by the health system carries substantial societal benefits, and that the collective nature of this initiative means that at least those patients who benefit from genome sequencing have an ethical obligation to share their health information. This obligation is grounded in considerations of fairness. Furthermore, we argue that the use of genomic data for the advancement of medical knowledge should be permitted without explicit consent and that international and other bodies should be granted access to these data, provided certain conditions are satisfied.
ETHICAL DILEMMAS IN HUMAN BIOBANKS
2022
Biobank refers to repositories where human biological specimens such as tissue, blood, and body fluid are kept for medical research. The culture of biobanking dates back to antiquity. This is seen in the practice of keeping the bodies of the long dead in ancient Egyptian museums. It is found in the ancient archives, where relics of Christian saints and martyrs are kept in Cathedrals and churches across Europe. The banking of human specimen is also evident in the various ranges of human tissues, bodies and bones that form much of our cultural, religious, and anthropological heritage. Beginning from the 20th century, however, the idea of keeping human specimen has taken a new turn from archaeological and religious evidences to a resource, employed by researchers to advance our understanding of human health and diseases. This new turn is not without its challenges. The ethical cum cultural/religious dilemma of these challenges is the central concern of this study. The quandaries are basically twofold: I. the issue of consent and the banking of specimen. Can there be an informed consent when it is difficult to accurately foresee how biomedical research, pharmacogenetic, or genetic research will develop in years to come? Should specimen be traceable or non-traceable to the donor when the former has a higher scientific value and the latter undermines donor’s confidentiality and privacy? II. Concerns about the donor; should the specimen of an entire group of people be banked, when such can lead to stigmatization and discrimination? What role does religio-cultural beliefs and practices play in human specimen donation and banking? The study examines Kant’s Categorical imperatives and the principle of the common good as interventions to the quagmire that the ethics of biobanking poses. Key words: Human specimen, Biobank, Ethics, Kantianism, Common good
After the revolution? Ethical and social challenges in ‘personalized genomic medicine’
Personalized Medicine, 2012
Personalized genomic medicine (PGM) is a goal that currently unites a wide array of biomedical initiatives, and is promoted as a ‘new paradigm for healthcare’ by its champions. Its promissory virtues include individualized diagnosis and risk prediction, more effective prevention and health promotion, and patient empowerment. Beyond overcoming scientific and technological hurdles to realizing PGM, proponents may interpret and rank these promises differently, which carries ethical and social implications for the realization of PGM as an approach to healthcare. We examine competing visions of PGM’s virtues and the directions in which they could take the field, in order to anticipate policy choices that may lie ahead for researchers, healthcare providers and the public.
The Journal of law, medicine & ethics, 2005
iomedical research has always relied on access to human biological materials and clinical infor-B mation, resources that when combined form biobanks. In the past, it appears that investigators sometimes used these resources with relatively little oversight, and without the consent of the individuals from whom these materials and information were obtained. Several developments in the last ten to fifteen years have converged to place greater emphasis on the role of individual consent in the creation and use of biobanks. The most important by far is the power of information technology, which has transformed our lives in almost every domain. In the research setting, it is now easy to abstract information from electronic medical records. Computers make it possible to analyze enormous datasets and have contributed in essential ways to the dramatic increases in our understanding of genomics and other areas of biomedical science. Information technology, however, has a potential Achilles heel. If inadequate attention is paid to security, others can access electronically stored information and perhaps use it to harm individuals and larger groups. As a result, people are increasingly worried about their privacy and want more control over who has access to information about them, and under what conditions. These desires are often manifested in requests for more stringent requirements for informed consent.