SIENNA D5.2: An international code of conduct for data sharing in genomics: A proposal

As part of the SIENNA consortium proposals (WP5), the deliverable proposes an international code of conduct for data sharing in genomics. It builds on results of D 2.3: Survey of REC approaches and codes for genomics, D2.4: Ethical analysis of human genetics and genomics and D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics.

To draft the proposed code of conduct, we adopted a mix of methods involving a literature review, synthesis of pertinent existing codes of conduct, a workshop of an expert panel and soliciting feedback from SIENNA stakeholders.

The deliverable addresses specific concerns and gaps as identified via literature namely; identifiability, broad consent, portability accessibility and return of results, compelled disclosure and lastly withdrawal of consent. Furthermore, we propose mitigation measures as recommended by experts and stakeholders and through synthesis of relevant past codes. The results have been discussed in the light of GDPR which is the most relevant legal framework within the EU.