I am happy to announce our “Global Genes, Local Concerns Symposium on Legal, Ethical and Scientific Challenges in International Biobanking” to be held at the University of Copenhagen (DK) on 16 March 2017, 08:00-18:30. Among the many prominent experts speaking at this conference we find the PFC’s very own Glenn Cohen and several speakers with a PFC “history” or close PFC links, such as Bartha Knoppers, Tim Caulfield, Nicholson Price and Jeff Skopek.
A detailed program and further information is available here and here.
This Symposium marks the final phase of the Global Genes-Local Concerns project. In accordance with the goals of this large cross-faculty project, the Symposium deals with legal, ethical and scientific challenges in cross-national biobanking and translational exploitation. Leading international experts and invited speakers will discuss how national biobanks contribute to translational research, what opportunities and challenges regulations present for translational use of biobanks, how inter-biobank coordination and collaboration occurs on various levels, and how academic and industrial exploitation, ownership and IPR issues could be addressed and facilitated. Special emphasis will be laid on challenges and opportunities in addressing regulatory barriers to biobank research and the translation of research results, while at the same time securing ethical legitimacy and societal interests.
These issues will be dealt with in 4 main sessions covering (1) BIG DATA AND MODES OF COLLABORATION; (2) PATIENT INVOLVEMENT; (3) TRANSLATIONAL MEDICINE & TECH TRANSFER, as well as (4) GUIDELINES & GOOD GOVERNANCE.
- Bartha Knoppers, Mc Gill University (Canada)
- Glenn Cohen, Harvard University (US)
- Timo Minssen, University of Copenhagen (DK)
- Tim Caulfield, University of Alberta (Can)
- Michael Madison, University of Pittsburgh (US)
- Jeff Skopek, University of Cambridge (UK)
- Brian Clark, Director, Human Biosample Governance, Novo Nordisk A/S (DK)
- Jane Kaye, University of Oxford (UK)
- Anne Cambon-Thomsen, INSERM, Toulouse / CNRS Director (Fr)
- Klaus Høyer, University of Copenhagen (DK)
- Aaro M. Tupasela, University of Copenhagen (DK)
- M. B. Rasmussen, University of Copenhagen (DK)
- Åsa Hellstadius, Stockholm University (Sweden)
- Peter Yu, A&M Texas University (US)
- Esther van Zimmeren, University of Antwerp/Leuven (Belgium)
- Nicholson Price, University of Michigan Law School (US)
- Karine Sargsyan, BBMRI/Head of Biobanking-Graz (Austria)
- Eva Ortega-Paino, BBMRI, Lund University (Sweden)
- Nana Kongsholm, University of Copenhagen (DK)
- Klemens Kappel, University of Copenhagen (DK)
- Helen Yu, University of Copenhagen (DK).
For participation in the event please use this registration form no later than Friday, 10 March 2017, 12:00 at the latest.
We are looking very much forward to welcoming you in wonderful Copenhagen on 16 March 2017.
Last week, as the New York Times reported, a fight over documenting informed consent to a particular Jewish circumcision ritual is brewing. To quote from the article:
The city Board of Health passed a regulation in September that required written parental consent before a ritual circumcision could be done. In the procedure, common among ultra-Orthodox Jews, the person performing the circumcision uses his mouth to remove blood from the incision. The oral contact, known in Hebrew as metzitzah b’peh, is considered dangerous by public health officials, because of the possibility of spreading diseases, specifically herpes. Failure to comply with the regulation could result in warnings and fines.
To be clear the New York City Board of Health has NOT outlawed the procedure, despite its herpes risk. Instead it only requires that written parental consent be given. My first reaction, and I suppose the reaction of many, is “what could possibly be wrong with that?” On reflection, though, I began wondering what might be learned by juxtaposing this requirement against another one that is trying to influence parental choice…laws on informing women about the risks of abortion and requiring the offering or viewing of an sonogram.
As John Robertson, among others, has recently detailed:
Thanks to Pablo de Lora for pointing us to a new article from Bijan Fateh-Moghadam on the Cologne decision regarding male circumcision.
From the article’s conclusion:
Summing up, the Cologne Judgment misjudges the constitutional framework of the criminal law defense of proxy consent. Male circumcision in children, if performed lege artis and with the consent of the parents, is lawful, because it does not exceed the general legal limits of parental consent. Parents who circumcise their sons following Jewish or Muslim tradition do not claim for a legal privilege or “reasonable accommodation”, they rather utilize the parental right to the care and custody of the child and freedom of religion as guaranteed by the general law. The justification of male circumcision therefore does not follow from a religious or cultural defense but from the well-established principles of parental proxy consent. Hence, also the – circular – argument of the Cologne Judgment with reference to Art. 140 GG in conjunction with Art. 136(1) of the Weimar Constitution is misleading, because male circumcision does not exceed the limits of the general law in the first place.
[posted on behalf of Al Roth]
Al will be cross-posting here from his Market Design blog, and he’s let us know that he plans to follow-up soon on the circumcision debate around the world. For a preview of what’s to come, check out his related posts from earlier this summer: http://marketdesigner.blogspot.com/search?q=circumcision&max-results=20&by-date=true.