Ethical endgames: broad consent for narrow interests; open consent for closed minds.

نویسندگان

  • Jan Reinert Karlsen
  • Jan Helge Solbakk
  • Søren Holm
چکیده

The ongoing legal and bioethics debates on consent requirements for collecting, storing, and utilizing human biological material for purposes of basic and applied research—that is, genomic research biobanking—have already managed to pass through three ostensibly dissimilar stages: during the last two decades or so, a mudslide of research papers, policies, and guidelines have been produced advocating anything from (1) presumed consent; to (2) expressed, full-blown informed consent; to the current mode of (3) broad consent. Although it would be tempting to reconstruct these stages according to a historical dialectic, in which the latest consent model supersedes (aufhebt) the preceding ones, a critical analysis of the debate does not suggest that a qualitatively conceptual change has taken place. In fact, one of the most remarkable features of this debate is how little has been achieved conceptually, and how much effort has been laid down in balancing the purported interests of different stakeholders. With the arrival on the scene of (4) open consent models, we argue that the concept of consent may even become reduced to a hollow repetitive ritual, devoid of any relevant moral content. Even though the different models (1–4) apply different outlooks on the distribution of interests as well as possible benefits and harms to different stakeholders involved in genomic research biobanking, in terms of the languages adopted, we are still firmly within the ethical frameworks of medical research and transplantation medicine. Consequently, the interests of research biobank donors tend to be debated as if they were identical to the interests of research subjects and patients in a medical context. This conflation of contexts arguably has some detrimental effects on our ability to ground the debate in the complex realities of genomic research biobanking, and the normative challenges it poses for individuals, institutions, and societies. Evidence suggests that the fundamental

برای دانلود رایگان متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید

ثبت نام

اگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید

منابع مشابه

Consent to Biobank Research: Facing Up to the Challenge of Globalization.

There is broad agreement that open-ended consent to research involving banked specimens and associated data is morally justifiable. Importantly, this approach is justifiable if, and only if, clear mechanisms are in place for 1.ethical and scientific oversight, and 2. ongoing communication with tissue donors. The problem for those in favour of open-ended consent for research is that biobanks hav...

متن کامل

Comparison of Closed-Ended, Open-Ended, and Perceived Informed Consent Comprehension Measures for a Mock HIV Prevention Trial among Women in Tanzania

Verifying participant comprehension continues to be a difficult ethical and regulatory challenge for clinical research. An increasing number of articles assessing methods to improve comprehension have been published, but they use a wide range of outcome measures including open-ended, closed-ended, and self-perceived measures of comprehension. Systematic comparisons of different measures have ra...

متن کامل

Informing the consent process.

Because the legal and ethical aspects of informed consent are often foremost in clinicians’ minds, it is easy to forget that the purpose of informed consent is to aid in decision making. Informed consent forms, for example, are often written with legal and institutional priorities in mind,1 and patients in turn assume that the primary purpose of such forms is to protect physicians and their ins...

متن کامل

Ethnicity and the ethics of data linkage

Linking health data with census data on ethnicity has potential benefits for the health of ethnic minority groups. Ethical objections to linking these data however include concerns about informed consent and the possibility of the findings being misused against the interests of ethnic minority groups. While consent concerns may be allayed by procedures to safeguard anonymity and respect privacy...

متن کامل

Beyond informed consent: the therapeutic misconception and trust.

The therapeutic misconception has been seen as presenting an ethical problem because failure to distinguish the aims of research participation from those receiving ordinary treatment may seriously undermine the informed consent of research subjects. Hence, most theoretical and empirical work on the problems of the therapeutic misconception has been directed to evaluate whether, and to what degr...

متن کامل

ذخیره در منابع من


  با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید

عنوان ژورنال:
  • Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees

دوره 20 4  شماره 

صفحات  -

تاریخ انتشار 2011