Genetic Discrimination Observatory

Regulatory and Ethics

Date: Wednesday Feb 23rd 2022

Time: 5am PT / 8am ET / 2pm BST / 12am (Thur) AEDT.

Meeting Chair(s): Yann Joly

Attendees [Name(Affiliation)]: Yann Joly (CGP/McGill), Kristina Kekesi-Lafrance (CGP McGill/ GA4GH), Maili Raven-Adams (GA4GH), Edward Dove (UofEdinburgh), Yvonne Bombard (St.Mikes/UofToronto), Palmira Granados Moreno, Shu (Sue) Hui Chen (NHLBI), Arzoo Ahmed (Genomics England), Vanessa Vogel Farley (Rare X), Charles B. Epstein (Broad Institute), Katherine Blizinsky (NIH/OD), Iddil Bekirov (NIH), Jamal Nasir (Northampton), [Other?]

RECORDING 
(Passcode: zv.8H2%=)

Action items:

1. Please let us know if you want to be further involved in the GDO work: rews-coordinator@ga4gh.org
2. Please share with us any GD policies you may have to either inform or prevent GD that can be part of our preparation kit
3. Please share with us your GD consent clauses or any policies that you think may be relevant to develop consent tools

Minutes:

Approval of the Genetic Discrimination: Implications for Data Sharing Projects (GeDI) by GA4GH community and next steps

https://www.ga4gh.org/wp-content/uploads/Genetic-Discrimination-Dec.-2-2021.docx.pdf 

YJ: That was our first step: to agree on a common framework of ideas that we can build upon for future documents/tools

At the GDO, we are thinking of building a FAQ section, so please let us know if you think the GeDI document misses anything (it’s meant to be accessible for international researchers) so we can add these elements in our FAQ

Delphi survey on identifying the elements of an optimal GD policy (launch of round 2!)

YJ: goal of the survey is to identify key elements of GD policies and policies in its broadest meaning (eg law, moratorium, recommendation) in order to address GD efficiently

This tool would be for countries to amend their GD laws or adopt GD laws

GD: recruitment in June 2021, we continue to receive answers by october 2021 (maximize recruitment of experts) - we have great participation, great first round

Collected and analyzed responses from over 60 countries, very diverse answers, impressive

Round 2 of a Delphi survey is a big step ! New questionnaire launched

We ask all experts of round 1 to do round 2, the more experts who complete all 3 rounds, the better the results of our survey will be, there are already some experts who answered round 2 (takes about 20 min)

YJ: many countries represented - impressive diversity

Down side of our survey: no low income countries, but a bit predictable since they don’t have GD on their radar (no capacity to do genetics), and if they do, they don’t have certain things that we do take for granted (insurance and work) so they have different priorities

However, we need to reach out to these communities, if not on their radar now, will be later and it's an ethical issue that should be addressed at some point, so they should be aware

PG: none of these countries because there are no experts from there that were referred?

GD: exactly, no experts were referred to us from these countries

VVF: which countries would be ideal?

YJ: we aim for a worldwide representation that is as wide as possible

South Africa is the only country from Africa that we have, we have some Eastern European and Asian, we don’t have any from South America, which would have been ideal

Because it's a delphi, we can’t recruit more, we have to aim on keeping the ones we have

We would like to get more countries involved later however, one way or another

Aida in the chat mentions that she is from Venezuela

YJ: happy to see you’re on board and welcome to the group!

Delphi: we are hoping we can wrap this up within a year, which could be fantastic

Addressing events of genetic discrimination/stigmatization at the level of population groups & positive genetic discrimination

YJ: This is where we would like to move towards next

It has been very challenging to think about this project at the population project

We often hear about stigmatization of groups (eg Black American and sickle cell disease, BRCA gene, Ashkenazi Jews) sometimes their data is misused to develop social policies or they are misportrayed in the media

How do we make sure these populations are protected when they were historically stigmatized?

YB: very timely, covid has exposed many of these issues

First step - to acknowledge the stigma that has occurred historically and how some behaviors have already impacted the trust of some populations may have in doctors/scientists, not only in recruiting, but also in how they engage collaboratively with these populations

To achieve that, need a moment of reflection and understanding of what the history was, and then what are the goals and steps, we have to go backwards before going forward, this document should start from a reflective position

AA: I work on the newborn sequencing program at Genomics England, concerns we hear from the ground: certain very obvious practical, social, structural factors that explain why these groups have been impacted in the way that they have, and then we should look into these genetics causes and variations, so it situates the cause in a very different place, so there is a piece of work to do to situate genomics data alongside other data sets (eg employment), so bring genomics into conversation with other forms of knowledge, that could be another aspect to explore to alleviate some of these worries people may have when they are used to being blamed for the problems they are facing

VVF: GA4GH is making an excellent job to track this information down (makes DUO more efficient for patients), you want to be able to defend or not defend your genetic data as either disease progresses or time goes on

YJ: all of these questions are very high on the GA4GH priority list

It can be hard to put ourselves in the shoes of these populations, we have to ask ourselves how we are portraying these populations throughout our research, not just about genomics, but the surrounding information as well, ought to be inclusive, but challenging to achieve

VVF: forward thinking, we should not rely on things of the past that are already there and are inherently biased/discriminatory

YJ: we have to ID challenges that are there from the get go

Also issues about formulating results without having other people interpreting the results in a certain way that can result in stigmatization

First step: raise of the issues that we can think of, what would you include in an preparation kit to avoid accidents (ie stigmatization) even before engaging with those groups

We should also consult the community of researchers at GA4GH

If you have seen something in your policies (local or national level), please bring them to my attention so I can have a look at them

It would start us on the research: identify challenges, what are ways to address them and how to involve the broader international community

YB: we are focusing on stigma and discrimination, but seems like our work is linked to the diversity group’s work - it may be overlapping with what this group is tackling

YJ: Maili and I will be attending the meetings on that group to make sure that there are is no duplication of our work

MRA: yes these two groups can be well harmonized together, one is more specific and the other has more long term effects but they definitely relate to one another

YJ: we also want to avoid survey fatigue of the GA4GH community

We also want to address the phenomena of intersectionality - to increase our awareness and the one of researchers’ to that factor as we are advancing in our research

YB: given the global reach of this organization and how issues of cultures are really at the forefront of stigma and discrimination and how different cultures may orient different in how sitigma and discrimination might look like in their communities, how do we want to address that - take an international stance or be context specific?

YJ: it’s a tough question, we’ll see as we progress, it’s a common challenge of GA4GH

Of course, open to suggestion, no perfect solution from the start

We will try to be as inclusive as possible of other voices in this

We will put in place dropbox boxes in which you can contribute

Please let us know rews-coordinator@ga4gh.org 

Consent documents and other materials about GD collected from GA4GH members

YJ: we would like to know if you have any interesting consent clauses or tools that can be of any use to other, either to inform or prevent GD, we can include it in our research and make it available to a broader community

Some clauses are already addressed through the work of the GA4GH Consent Task Force: https://www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/ 

Anything new we will share with the Consent Task Force first  

Varia

YJ: Any other tools you would like us to develop? Please let us know

AA: do we have anything that details the different from of discrimination that can occurr in this context, if not, manybe we should think of developping it

YJ: excellent idea, often we think of insurance because we have some evidence that it’s a key affected area, but we may pass by other topics that are overshadowed

ED: foundational what AA suggested, there is a discussion that we should have as to what is the definition of genetic discrimination - but also what does the law consideres as GD, we need to explore these 2 elements

YJ: maybe we could do a short piece/paper on this, much more an ethical piece than empirically driven, but indeed we should not have a narrowed perspective because we may miss things that are out there

Please let us know if you want to get involved

We should have another meeting in about a month

Chat Room

00:30:32        Maili Raven Adams:        https://www.ga4gh.org/wp-content/uploads/Genetic-Discrimination-Dec.-2-2021.docx.pdf 

00:30:55        Kristina Kekesi-Lafrance:        Agenda for today:

1.        Approval of the Genetic Discrimination: Implications for Data Sharing Projects (GeDI) by GA4GH community and next steps

2.        Delphi survey on identifying the elements of an optimal GD policy (launch of round 2!)

3.        Addressing events of genetic discrimination/stigmatization at the level of population groups & positive genetic discrimination

4.        Consent documents and other materials about GD collected from GA4GH members

5.        Varia

00:38:41        Aida Falcon:        I am from Venezuela! Starting with you in the group today!

00:45:48        Shu 'Sue' Hui Chen (NIH):        Also shouldn’t forget about the emerging mental health issues.

00:50:32        Chuck:        beautiful point Arzoo.  there are other examples of confounding genetic and “cultural” influences.

00:53:08        Vanessa Vogel-Farley:        Contemporary reporting/collecting of data where the referenced materials/publications propagate the same discrimination issues

01:01:11        Aida Falcon:        Agree

01:08:22        Kristina Kekesi-Lafrance:        rews-coordinator@ga4gh.org 

01:11:19        Kristina Kekesi-Lafrance:        You can find all the REWS consent clauses tables here: https://www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/ 

01:13:39        Aida Falcon:        I  can help with  information about Latin America. In fact , I am in the RELAGH -Latin American Net work of Human Genetics (In fact I am past President of RELAGH). I will be happy to work on it!

01:14:41        Yvonne Bombard:        To add to Arzoo’s point: outline how researchers work/interpretations can lead to discrimination

01:16:14        Kristina Kekesi-Lafrance:        +1 to Ted's intervention

01:17:47        Katherine Blizinsky (she, her):        Absolutely. Please count me in!

01:19:18        Yvonne Bombard:        Happy to contribute to the paper, as well.

01:19:29        Aida Falcon:        Absolutely! Happy to contribute