Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics?

Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics?

Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics?

Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics?

Synopsis

This book develops a legal argument as to how persons with intellectual disability can flourish in a liberal setting through the exercise of human rights, even though they are perceived as non-autonomous. Using Ronald Dworkin's theory of liberal equality, it argues that ethical individualism can be modified to accommodate persons with intellectual disability as equals in liberal theory. Current legal practices, the case law of the ECtHR on disability, the provisions of the UNCRPD and a comparative analysis of English and German law are discussed, as well as suggestions for positive measures for persons with intellectual disability. The book will interest academics, human rights activists and legal practitioners in the field of disability rights.

Excerpt

There are numerous biobanks all over the world. They have been created and are maintained by government agencies, individual researchers and private concerns. They hold biological materials, data derived from these materials, as well as scans and images of the parts and tissues of individuals. These materials were collected for a variety of purposes.

Individual researchers interested in a particular disease or condition who have solicited their subjects to donate tissues or biological samples with varying degrees of informed consent have built some banks. Some biobanks were built decades ago by researchers who realized or, perhaps more accurately, hoped that a tissue bank of biological samples would one day prove of great value to future generations of scientists and patients. They collected samples of tumours and other materials under the presumption that these were waste materials for which no consent was required. For example, a search through decades-old frozen infant stool samples for which no valid consent was obtained recently yielded rich dividends for scientists from the National Institute of Allergy and Infectious Diseases (MAID) helping to devise a test for the norovirus, a major cause of acute gastroenteritis outbreaks in people of all ages.

Other biobanks have been built up by public health agencies routinely sampling the blood of newborns for genetic testing at birth. Still others consist of banks collected for one specific purpose - forensic identification or to conduct research on a particular disease using a specific research protocol. Private entities have collected various forms of biological materials for study, to assist in facilitating various forms of organ, tissue and cell transplantation or to better understand pathological disease processes.

All of these biobanks have, in recent years, come to be seen as hugely valuable in the investigation of diseases, disorders, behavioural differences, anthropological and genealogical history and for many other purposes. While some rules have emerged to govern the collection and use of tissues, genetic information, biological samples and data linked to biological samples to create new biobanks the huge number of existing biobanks poses an enormous ethical challenge for researchers and society.

No policies exist to regulate the circumstances and conditions under which historical biobanks may be used for important retrospective research in situations where the data/specimens were collected in the past for clinical research or other purposes but, for which consent and authorization were not given to use in current and future studies. And even new tissue banks tend to be constructed using local rules and values.

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