Open access genomes

Open access genomes! (but how is OA protected?), Dave Love, dave love’s blog, October 21, 2008. Excerpt:

We have come a long way in the last 15 years since Craig Venter and his company, Celera, refused to deposit their human genomic sequence in NCBI/GenBank and others who practice gene patenting deflated our collective tyres. I think that PGP understands the benefits of being OA, but I didn’t see anything on their website about a legal backbone to protect that access, such as a Creative Commons copyrights. I hope they will get some advice on this from librarians, lawyers, publishers, and others in the OA community!

For more about the PGP, see: More on the Personal Genome Project, Gavin Baker, Open Access News, October 20, 2008; Profile of the Personal Genome Project, Gavin Baker, Open Access News, August 06, 2008; The Personal Genome Project, George M Church, Mol Syst Biol 2005; 1: 2005.0030 [Epub 2005(Dec 13)].

Modified on October 21, 2008:

See also: From genetic privacy to open consent, Jeantine E Lunshof, Ruth Chadwick, Daniel B Vorhaus and George M Church, Nat Rev Genet 2008(May); 9(5): 406-11. Excerpts from the full text (not OA):

Box 3 | Key features of the Personal Genome Project’s open-consent policy

Open consent as part of the Personal Genome Project implies that research participants accept that:

* Their data could be included in an open-access public database.
* No guarantees are given regarding anonymity, privacy and confidentiality.
* Participation involves a certain risk of harm to themselves and their relatives.
* Participation does not benefit the participants in any tangible way.
* Compliance with monitoring of their well-being through quarterly questionnaires is required.
* Withdrawal from the study is possible at any time.
* Complete removal of data that have been available in the public domain may not be possible.

The moral goal of open consent is to obtain valid consent by effectuating veracity as a precondition for valid consent and effectuating voluntariness through strict eligibility criteria, as a precondition for substantial informed consent.

[End of Box 3]

Open consent. Open consent means that volunteers consent to unrestricted re-disclosure of data originating from a confidential relationship, namely their health records, and to unrestricted disclosure of information that emerges from any future research on their genotype–phenotype data set, the information content of which cannot be predicted. No promises of anonymity, privacy or confidentiality are made. The leading moral principle is veracity — telling the truth — which should precede autonomy. Although, in clinical medicine, veracity is the legal norm in many jurisdictions, physicians may try to justify the withholding of information by invoking the ‘therapeutic privilege’. In research, there is no such privilege, and when seeking informed consent from research subjects, distorted or incomplete information could undermine trust in researchers and in science.

Comment: Those contemplating OA to genetic data need to pay careful attention to the concept of “open consent“, and its emphasis on “telling the truth” and on “voluntariness”. It’s also noted in the full text that “in the PGP potential volunteers are strongly advised to discuss their participation with relatives“.

Advertisements

5 Comments »

  1. Jim Till said

    See also: Personal Genome Project releasing genetic data today by Daniel MacArthur, Genetic Future, October 20, 2008.

  2. davelove said

    Hi Jim. Can you clarify what your concerns are with open consent as they relate to PGP? Is it an issue that you think will undermine PGP and are there any policies that can obviate the issue?

  3. Jim Till said

    Dave, my concern is more about personalized genetic testing in general than about the PGP. See, for example, How Much Can You Learn From a Home DNA Test? by Boonsri Dickinson, Discover, August 20, 2008. Brief excerpt:

    I was so hyped up about getting my DNA analyzed, I didn’t really think about the consequences of having all that information at my fingertips.

    See also: Your Take: Would You Get Genetic Testing? (posted August 29, 2008 on Blueprint for Financial Prosperity) and the comments attached to this post. Is open consent an appropriate approach to dealing with all of the uncertainties about the possible risks and benefits associated with personalized genetic testing? My own opinion: it’s appropriate for those who are really well-informed about genetics, but probably not, at present, for those who aren’t as well-informed.

  4. davelove said

    I think I agree with you about being extremely well-informed. I am a microbiologist and routinely use PCR and sequencing, and I am not sure I understand all the ramifications of having my genome studied– nor can I predict the future consequences.

  5. Jim Till said

    See also: NEWS: New public genome database to spark research, unease by Lauren E Wool, BioTechniques, October 19, 2008. Excerpts:

    The partial genomes of 10 volunteers will be publicized in an effort to stimulate research and quell privacy concerns.

    …..

    But the argument surrounding privacy may prove to be moot, after all. In a paper published August 29, 2008, researchers from the Translational Genomic Research Institute and the University of California-Los Angeles determined a method for identifying a single individual’s DNA from within a complex mixture of anonymized genomic data. This finding, as reported by BioTechniques in September, prompted the National Institutes of Health to block access to two formerly public databases.

    For another post about the paper: Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays by Nils Homer and 9 co-authors, including David W Craig, PLoS Genet 2008( Aug 29);4(8): e1000167, see: Ethics and access to databases.

RSS feed for comments on this post · TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: