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Enrolment by Surrogate Authorisation into Stroke Genetic Research
and enroling via surrogate authorisation by a legally authorised a blood draw are minimal, ensuring that genetic information poses
representative. Unfortunately, research advance directives are minimal risk to individuals requires systemic attention toward
rare
37,38
and even when available can be problematic to implement.
39
implementing adequate laws, policies and practices supported by
appropriate infrastructure. n
Awaiting return of capacity does little to address concerns about
consent bias, especially in a disease such as stroke with a high
case fatality.
35
Enrolment via surrogate authorisation is perhaps the
Donna T Chen is an Assistant Professor of Biomedical Ethics, Psychiatry and Public
Health Sciences. She is a Research Subject Advocate with the General Clinical
least likely to adversely affect generalisability and should remain an
Research Center at the University of Virginia and serves on several local and
option for stroke genetic research. Research and experience
national committees in research and clinical ethics.
suggest that, although imperfect, family member surrogates might
James F Meschia is Chair of the Cerebrovascular Division at the Mayo Clinic,
be as acceptable in research as it is in clinical care.
40–42
Jacksonville. A Fellow of the American Academy of Neurology and American Heart
Association, Dr Meschia is Principal Investigator of the Ischaemic Stroke Genetics
Conclusions
Study, the first genome-wide association study in stroke, and the Siblings with
Ischaemic Stroke Study, the largest family-based ischaemic stroke study. He is a
Enroling via surrogate authorisation for stroke genetic research
member of the Carotid Endarterectomy versus Stenting Trial Executive Committee,
should be seen as an acceptable alternative to excluding
Associate Editor of the Journal of Stroke and Cerebrovascular Diseases and on the
individuals based on concerns over decisional impairment and the
Editorial Boards of Stroke and Mayo Clinic Proceedings.
lack of prospect for direct personal benefit. Genetic research
Bradford B Worrall is an Associate Professor of Neurology and Public Health
involving complex disorders such as stroke poses little risk, and
Sciences at the University of Virginia. He is a Fellow of the American Academy of
failure to include stroke patients with impaired decision-making
Neurology, the American Neurological Association and the American Heart
capacity jeopardises scientific validity. It is no longer prudent to
Association. He is an Associate Editor of Neurology. In 2007, the American
Academy of Neurology honoured him with the Michael S Pessin Stroke Leadership
rely primarily on individuals to ensure that their genetic
Prize. He is a founding member of the International Stroke Genetics Consortium
information is adequately protected. Just as appropriate
and runs a translational stroke genetics laboratory.
infrastructure and processes are required to ensure that risks from
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