San Francisco, 19-20 April 2013

"The Truth of Personalized Medicine: Our Commons Future"

Sage Bionetworks Commons Principles

The Principles are an aspirational rather than prescriptional document guiding behaviors and processes for all those who choose to work in the Sage Bionetworks Commons environment including the new computational platform ‘Synapse’. It is meant to capture the creative and cooperative spirit of the Commons goals for progressive community engagement and health improvement.  Specific tools for enabling transfer, analysis and sharing of data are also being developed as an outcome of the 2011 Congress.

During the April 15-16, 2011 Sage Bionetworks Commons Congress an interdisciplinary Community of Interest entitled, “Enabling Sharing” worked on a draft of guiding principles for Commons activities. Appended comments prior to April 18th refer to the earlier drafts and were considered during the workgroup discussions. Following the 15 April Workgroup D discussions, Robert Cook-Deegan presented the version below to all Congress participants.  Based on Congress inputs the Principles were further revised and then approved by the Sage Bionetworks Board of Directors in May 2011 and a public confirmation process has begun.

We welcome your thoughts and suggestions through the comments section below or by emailing info@sagebase.org

Sage Bionetworks Commons Principles
San Francisco, California, April 2011

Understanding human biology requires a new community-based vision of open access innovation that respects and links all stakeholders and supports a new culture of cooperative, data-intensive science.

We pledge to take up this challenge and have drafted the Sage Bionetworks Commons Principles to guide the development of an open source community where computational biologists can develop and test competing models built from common resources.  These principles will guide the operations and evolution of the Commons, through its policies, procedures and practices.  The Principles will be revised and refined as experience accumulates with initial governance of the Commons guided by two Sage Bionetworks Directors and two external experts.

  1. The purpose of the Commons is to expedite the pathway to knowledge, treatment, and prevention of disease.
  2. We will promote collaborative discovery through the creation and support of a broadly accessible digital Commons consisting of curated data and methodological tools in which analytical results are shared in a transparent, open fashion.
  3. The Commons will respect the rights and interests of all contributors including individuals from whom data are derived, researchers who collect and analyze data, and scientists and physicians who develop and implement healthcare advances. Those not respecting these rights will be excluded from the Commons.
  4. Contributions to the Commons shall be appropriately acknowledged and attributed.
  5. The Commons will promote data and tool sharing and distribution using standards that enable efficient reuse, compilation and comparison.
  6. The Commons will hold no intellectual property rights in, and will not permit encumbrances on, data and other elements within the Commons.  This will not, however, preclude individuals from protecting new goods and services developed using data and other elements from the Commons.

[1] http://precedings.nature.com/documents/5883/version/1

12 Responses to “Sage Bionetworks Commons Principles”

  1. Andy Oram
    April 8th, 2011 @ 4:04 pm

    There are many initiatives in open courseware, open scientific journals, and other types of information sharing on the Internet among scientists. It’s worth identifying and reaching out to these groups.

  2. Liz Horn
    April 11th, 2011 @ 9:22 am

    What a great launching point for our discussions later this week. I was thinking about the audience for this document. While this is a more technical document, I do wonder if we have included all relevant stakeholders in the last sentence of the preamble: “research policy makers, academic research institutions, funding agencies, scientists, and technologists”.

    Specifically, is there a role for non-scientists/non-technological people (e.g. the public, patient advocates, citizen scientists etc). This overlaps with Group A and it will be important to hear their thoughts.

  3. Misha Angrist
    April 11th, 2011 @ 9:44 am

    This is a wonderful draft and long overdue.

    One comment:

    “Individual rights to privacy and authority over clinical subject study data must be respected, and the design challenges of building a commons that is compatible with human rights to control one’s own genomic information.”

    I always implore my students not to use the passive voice. Whose authority over clinical subject study data? Respected by whom?

    I am hoping we can discuss what Sage might say and do to make return of research results to human participants the norm.

  4. Greg Biggers
    April 11th, 2011 @ 1:56 pm

    Misha! Liz! Looking forward to collaborating with you and the rest of the group this week. Great to see your names on the list.

  5. Greg Biggers
    April 11th, 2011 @ 2:06 pm

    Agreed– this doc is a good start.

    I love Misha’s vision of making ‘return of research results to human participants the norm’ and would go even further– not just results, but all data associated with an individual participant.

    A couple of additional thoughts:

    1. Must our endeavor be limited to disease models? What about health models? The word “health” might be inclusive of both good and ill health.

    2. I advocate stronger language exhorting legal rights-holders to inform (maybe even seek explicit consent from?) individuals whose data is being contributed to the commons. The long term benefits of greater public engagement may be worth the short term burden placed on scientists.

    Said differently, perhaps we should redefine the word, “contributor” to include individuals on whose biology the data is based– not just the scientists collecting and curating that data.

  6. Liz Horn
    April 12th, 2011 @ 7:54 am

    Hi Greg!

    Interesting distinction between legal rights-holders and contributers. I’ve struggled with the word contributer and the role of the participant as a “data contributer”.

    It’s definitely a balance of giving participants a voice but not making it so burdensome that no data could ever be contributed to the commons.

    Good stuff! See you in a few days.

  7. Alice Rathjen
    April 14th, 2011 @ 11:34 pm

    Interesting principles. I have a different vision of what’s possible/needed but look forward to seeing what comes out of the meeting.

    Alice

  8. Craig Alexander
    April 15th, 2011 @ 2:10 pm

    I think this is a good start. Overall, I think it is too long and not as clear and direct as it should be. In the realm of minor edits, i suggest adding the word “reliable” along with comprehensible and usable in the second bullet point on page 2.

  9. sstressfl
    April 15th, 2011 @ 2:35 pm

    If you do decide to invite the public into this make sure you hire a good marketing/pr person to write the copy. It reads a lot like Spock speak and therefore kinda scary big brother-ish. Regards.

  10. Kelly Edwards
    April 15th, 2011 @ 2:51 pm

    These principles make good sense, and I agree with Liz Horn above re: patient/data contributor stakeholders, and I know you are already attending to that.

    My interest is in seeing a principle about open communication and transparency about how the data is used. This could be operationalized into a data use agreement. It need not be complicated – I think there are good reasons for feedback loops on how the data from the Commons is being used: accountability to contributors, credit to resource managers, and minimizing duplicate studies or inquiries (you would not want to replicate the siloed inquiry process that goes on now, where failed experiments are going on in 15 houses at once).

    One other minor point re: Terms of Use Agreement – I’d advocate for a tick box on each statement that the user is being asked to agree to – otherwise, we all scroll to the bottom and tick the one box without really absorbing what we are agreeing to.

    Thanks for your efforts! Kelly

  11. Rachel A. Ankeny
    April 15th, 2011 @ 3:07 pm

    Two quick comments which expand on the discussion this afternoon:

    (1) the values underlying the document (particularly those beyond sheer efficiency) need to be better articulated in the introduction to the document as presumably we want this to serve as a stand alone document.

    (2) particularly with Aled Edwards’s talk in mind, I think the document could benefit significantly from a bit more aspirational talk about how to create incentives for participation in this sort of undertaking. Given that certain regimes of credit, practice, and exchange are deeply ingrained in scientific culture, and without some major shifts and changes (in journals, academic structures, and funding schemes/agencies among other institutions), it will be particularly difficult for younger scientists to participate even if they wish to do so.

  12. Kelly Edwards
    April 16th, 2011 @ 8:30 am

    Re: Rachel’s point:

    One of the operational documents that can sit under the principles could be one about credit. There are movements afoot to get to a Biorepository Impact Factor, where recognition would come to repository managers, data contributors that become known as high quality, useful and useable (see Anne Cambon-Thomsen, CERN France). And also movements to shift the age-old and now dated promotions criteria within academic centers, moving toward factors that capture team science, resource development, and community-based work. See CCPH.org.

    I do agree with Rachel that the overall tone of the principles needs to be more aspirational, values-based, and rally the tribe toward aligning with these shared commitments. The whole can be edited to leave a statement of these core commitments and values, and leave the technical details to the operational documents that will enact those values.

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