Consultant – WHO guiding principles for human genome data sharing
( 2307958 )
Contractual Arrangement : External consultant
Contract Duration (Years, Months, Days) : 8 months
Job Posting: Aug 31, 2023, 3:24:21 PM
Purpose of consultancy
To contribute to the development of WHO guiding principles for human genome data sharing.
In July 2022, WHO’s Science Council issued the report ‘Accelerating access to genomics for global health: promotion, implementation, collaboration, and ethical, legal, and social issues. The report points out to substantive and extensive benefits of genomics for personal and public health, as well as to the importance of equitable use and responsible sharing of information obtained by means of genomic technologies. When genomic information is derived from human subjects, it has the potential to violate privacy. On the other hand, unduly restrictive rules about the generation, sharing, and use of genomic information limit the benefits that such information can provide.
Guiding principles and policies to regulate how data are generated, shared and used will support transparent governance and attribution of genomic evidence, ultimately benefiting subjects, researchers and society.
- Deliverable 1: Contribute to the development of the concept note and approach for the development of the WHO guiding principles and identify key global experts and resources in the field.(Expected within three weeks of the start of the consultancy).
- Develop concept note, according to WHO templates.
- Review and collate most relevant background documentation on principles of human genome data sharing.
- Propose a list of global individual experts in the field, for key expert interviews and for participation in consultations, bearing in mind geographical and gender balance.
- Propose a list of networks or groups relevant to the topic.
- Deliverable 2: Contribute to the development of consultation/meeting focusing on sharing of genomics data and evidence generated from human subjects.(Expected within two months of the start of the consultancy).
- Assist with the identification of participants.
- Conduct key interviews with experts internal and external to WHO.
- Contribute to the development of agenda and plans through coordination of working group meetings.
- Prepare background documentation.
- Deliverable 3: Provide technical input and coordinate for a consultative meeting in Q1 2024.
- Contribute to taking meetings notes.
- Collate input from experts.
- Facilitate and moderate sessions as needed according to the agenda.
- Prepare meeting report and share with participants (within one month of meeting end).
- Prepare final report and facilitate WHO clearance processes.
- Deliverable 4: Contribute to the development of a guiding document on human genomics data sharing.(Expected within 3 months of the meeting end).
- Develop draft WHO guiding principles, incorporating input from key expert interviews and from consultative meeting.
- Implement the public consultation phase through dissemination on WHO webpage and through networks.
- Incorporate all final input and develop final draft report.
- Facilitate the clearance processes for the document.
Qualifications, experience, skills and languages
- Advanced university degree in ethics, legal domains, justice or related fields.
- PhD in ethical or legal aspects of human genomics.
- At least 7 years’ relevant experience related to ethical or legal aspects of human genomics.
- Experience of ethical or legal aspects of genomics in LMICs.
- Excellent writing/editing skills.
- Excellent interpersonal skills.
- Strong organizational skills.
- Ability to meet deadlines.
- Ability to work independently and remotely.
- Ability to work collaboratively with diverse stakeholders in multidisciplinary and multicultural settings.
- Excellent and demonstrated written and oral communication skills.
- Excellent attention to detail.
- Ability to analyse and synthesize relevant information.
- Demonstrated ability to produce and deliver quality results, committed to timely deliverables.
- Expert knowledge of English.
- Intermediate knowledge of other WHO working language.
Off site: Home-based
The consultant is expected to travel.
Band level B-USD 7,000 – 9,980 per month.
Living expenses (A living expense is payable to on-site consultants who are internationally recruited):
Expected duration of contract:
8 months – part-time at 50%. Remuneration will be pro-rated accordingly.
Additional Information :
- This vacancy notice may be used to identify candidates for other similar consultancies at the same level.
- Only candidates under serious consideration will be contacted.
- A written test may be used as a form of screening.
- If your candidature is retained for interview, you will be required to provide, in advance, a scanned copy of the degree(s)/diploma(s)/certificate(s) required for this position. WHO only considers higher educational qualifications obtained from an institution accredited/recognized in the World Higher Education Database (WHED), a list updated by the International Association of Universities (IAU)/United Nations Educational, Scientific and Cultural Organization (UNESCO). The list can be accessed through the link: http://www.whed.net/. Some professional certificates may not appear in the WHED and will require individual review.
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