Tuesday, June 30, 2009

Kennedy Institute of Ethics Journal - Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings from an International Study

The paper Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings from an International Study was published in the Kennedy Institute of Ethics Journal.

Here is the abstract:

This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices.

I co-authored it with Alex Capron, Alexandre Mauron, Bernice Elger, Agomoni Ganguli-Mitra, and Nikola Biller-Andorno.

Thursday, June 18, 2009

CRAP paper accepted by journal - opinion - 11 June 2009 - New Scientist

The New Scientist reports thata computer generated paper was accepted by a peer review journal. A graduate student in library and information science at Cornell University in Ithaca, New York, "got a nonsensical computer-generated paper accepted for publication in a peer-reviewed journal."

I love this stuff! The ingenuity of the student, the naivete of peer-review, and the thought that the system can be easily undermined.

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Monday, June 15, 2009

Regulating assisted reproduction in Italy: a 5-year assessment - Human Fertility

A paper co-authored with Gilberto Corbellini discussing empirical evidence of how well the Italian law on assisted reproduction is doing five years after its enactment appears in Human Fertility.

Abstract. In 2004, the Italian parliament comprehensively regulated medically assisted reproduction. Law 40/2004 has outlawed several techniques and tightly compressed the freedom of research in the area of human reproduction and regenerative medicine. This article analyses the post-2004 political, bioethical and legal debate on assisted reproduction in Italy. The analysis is grounded on empirical evidence on fertilisation outcomes released in 2007 and 2008 by the Italian government, on recent amendments related to the regulation of preimplantation genetic diagnosis and on the debates on the status of spare embryos as for their availability for scientific researches. The analysis shows that Law 40/2004 has failed to improve the access of infertile couples to assisted reproduction techniques and keeps supporting practices that the other jurisdictions have rejected because they are unwise from a clinical standpoint. Moreover, Law 40/2004 created severe limitations to scientific researches in the fields of medical embryology, gynaecology and regenerative medicine. With the political support of some Italian political parties and the Catholic Church, Law 40/2004 disregards the expectations of the majority of Italian citizens, international guidelines of good clinical practice, international codes of medical ethics, the interests of infertile couples and the social and economic relevance of biomedical research.

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