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Bioethics and large-scale biobanking: individualistic ethics and collective projects*

机译:生物伦理学和大规模生物银行:个人主义伦理学和集体项目*

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摘要

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 debate - partly 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.
机译:像大多数生物伦理学的讨论一样,对人类生物库的检查在很大程度上取决于研究对象的权利,主要是知情同意以及对公共利益的某种姿态。但是,知情同意书是给有能力的有权利的个人的:专注于个人,因此它忽略了社会,经济甚至政治事务;着重于胜任的权利承担者,它不适用于明显不适合同意的情况(例如,年幼的孩子)或明显可以证明强制性的情况(犯罪分子)。利用英国大规模生物银行的经验,我认为对同意个人的关注扭曲了我们对生物库的思考方式,并产生了严重的实际影响。如果我们将用于医学研究的成人生物库与其他两种形式的生物库进行对比,就可以清楚地看出这一点。因此,儿童队列研究对于健康地研究遗传学和环境之间相互作用的健康科学研究至关重要,而在成人研究之后,这项研究的资金很薄。另一方面,法医学数据库吸引了巨额投资,但辩论很少-部分原因是,至少在这种情况下,同意是不相关的情况。与这些主要类型的生物银行相比,我建议限制“伦理”对个人权利起作用的因素。如此规模的项目应将我们的注意力转移到与医学研究的优先重点确定和组织有关的更为公开的政治问题上。

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