On 16th May 2011 Margaret Curnutte, PhD Candidate at the University of Milan, European School for Molecular Medicine and Bassetti Fellow at the Program on Science, Technology & Society at Harvard University will present a paper at the Bassetti Foundation in Milan outlining her work.
Curnutte has spent the last year part funded by the Bassetti Foundation working on ‘the construction of the genetic consumer in the US’ with Professor Sheila Jasanoff, Chair of the STS Program at Harvard University.
Her research addresses recent changes in attitudes regarding health care and medicine’s convergence with consumer culture. Her focus has been direct-to-consumer genetics testing, possible problems of rights, fraud, control and the political implications and government worries about the free availability of these services. One the one hand these companies argue that an individual has the right to access their own genetic information, but the fact that this information is processed and supplied by experts working for these very companies has lead to government intervention and the publication of several reports including this damming GAO report that claimed amongst other things that these companies ‘made medically unproven disease predictions’.
This topic has been addressed several times on the Bassetti website.
In 2006 Jeff Ubois interviewed Dr. Arthur Caplan about the implications of genetic testing,
In November 2009 home testing kits went on public sale in the UK, and a posting in December of that year addressed issues of privacy and children’s rights regarding paternity testing without their personal consent.
In Feb 2010 we reviewed a book entitled ‘Go Ask You Father’ in which Lennard Davis recounts his experiences of trying to discover his father’s real identity through DNA testing.
In June of the same year Davis visited the Bassetti Foundation conference suite here in Milan to participate in a round table discussion about his book and home genetic testing in general. The proceedings were reported in a further posting available both in English and Italian.
In March 2010 Margherita Fronte wrote a wide reaching article about doubts about privacy and potential of genetic testing that includes links to several articles both in English and Italian.
A posting from March 2011 in Italian cites an interview with George Church in which he discussed his creation of an open source genome database and that also contains a video of a lecture delivered by Church in English in 2009.
Several articles have appeared that address the problem of copyrighting genetic information including this post in italian in 2010 and the following in English that both discuss the current legal battle between private companies and individuals and the state over proporitary rights over genome information.
The presentation will take place on Monday 16 May 2011 at 15.30 in the conference suite of the Bassetti Foundation in Milan in Via Michele Barozzi 4.
Margaret Curnutte is candidate for a Ph.D. in Foundations Of the Life Sciences And Their Ethical Consequences at the european School of Molecular Medicine (SEMM) in Milan. She will be introduced by prof. Giuseppe Testa (IFOM/IEO, SEMM) and the discussion group will include Adam Arvidsson, Lecturer in Sociology at the University of Milan, and Francesca Petrera from the Centre of Molecular Biomedicine in Trieste, OggiScienza – Sissa Medialab.
The seminar is open to the public but for logistic reasons registration is required.
The seminar will begin at 15.30 and will be conducted in English. The discussion will be conducted in Italian and followed by an aperitif.
(photo: Day 0714 – 15DEC2010 – 23andMe – The Tube by Alex H Wolf from Flickr – amended)