Beyond the Sequence: Ethical, Legal and Social Contexts in Genomics

The specific aims of the workshop series will be co-developed by participants at the first online co-development session in January 2024.

The broader aims include exploring the wider landscape; addressing barriers and opportunities; and identifying next steps for guidance and recommendations for Wellcome and others.

• Landscaping

  • Highlighting and unpacking key underlying issues in embedding ELS research in genomics projects.
  • Highlighting and unpacking best practice in embedding ELS research in genomics projects.

• Barriers and opportunities

  • Incentivising collaboration and establishing new networks across genomics and ELS communities.
  • Seeding new project ideas and teams on which future research can be built.
  • Exploring novel ways of working, methodologies and funding models that will enable earlier and more embedded collaborative research of this kind.
  • Identifying potential new fields that open up as a result of these new collaborations and ways of working and ways to develop and support them in the future.

• Next steps

  • Making recommendations for next steps (for Wellcome and others) to sustain this form of collaboration and future research, including through potential funding opportunities.
  • Feeding into the development of the guidance for genomics projects being produced by Wellcome.

This workshop series is open to a wide range of researchers and practitioners, at all career stages, and from institutions anywhere in the world. We expect to be hosting up to 80 participants chosen through a combination of invitations and an expression of interest application process.

We hope to include a diversity of participants, including across:

• lived experience (for example, patient experience or research participation)
• research disciplines (including but not limited to genomics, bioethics, law, sociology and anthropology)
• fields of practice (including but not limited to policy, public engagement, funding, healthcare and medicine, clinical practice, and activism).

We want to ensure that the broadest possible range of people contribute to and benefit from the workshop. With this in mind, we are requesting that those interested in attending complete an Expression of Interest Form to help us select a group that can gain the most from and best fulfil the aims of the workshop.

We would particularly welcome expressions of interest from those based in low- or middle-income countries (LMICs) and those in lower resource settings.

Alongside a personal statement on why applicants would like to attend and what they hope to contribute, we will select delegates based on the following criteria, which aim to ensure a diversity of representation across:

• institutions and geographies
• career stages, especially those at an early career stage
• lived experience (for example, patient experience or research participation)
• research disciplines (including but not limited to genomics, bioethics, law, sociology and anthropology) and fields of practice (including but not limited to public engagement, funding, healthcare and medicine, clinical practice, and activism).

This series includes a half-day online co-development session; a two-day in-person workshop at Wellcome’s offices in central London; and a two-day in-person workshop hosted by The Ethics Lab, University of Cape Town (venue TBC).

As networking and better integration between genomics and ELS perspectives are core aims of the workshop series, we are keen to encourage in-person attendance wherever possible. However, we recognise that this may not always be possible, and so we will also be providing the option for active online participation in the workshops.

For those able to attend in-person, Wellcome will be covering:

• travel costs incurred to attend the workshop (including economy class flights, visa fees and transfers by public transport where appropriate)
• up to three days of accommodation to cover the duration of the workshop
• catered lunch and coffee breaks and a dinner / drinks reception.

We do not want other attendance costs to be prohibitive, and so a limited amount of extra financial support will be available to reimburse costs associated with attendance. If required, please get in touch to discuss further at GenomicsELS@wellcome.org.

If you are selected to attend, Wellcome’s Global Events team will be in touch about your personal travel arrangements.

We would particularly welcome suggestions about how we can make the workshop more accessible and inclusive. Examples include live translation or information in other languages; information in larger fonts or different formats; sign language provision; accessible meeting rooms; audio induction loops; prayer rooms; quiet rooms; childcare support; or support / options for slower internet connections. However, these are just examples, and we would be very happy to hear about how else we might be able to support you should you have any specific access requirements, and whether you are attending in-person or online.

If required, we can also support you with this application process.