This week (18 – 22nd October 2021), the American Society of Human Genetics (ASHG) hosted their annual meeting. The meeting had a wide range of talks and discussions about the emerging trends and technologies that are transforming science. Additionally, there were several sessions about the ethical and social issues that are facing the genomics community.
One of the focusses of The American Society of Human Genetics (ASHG) 2021 Annual Meeting was the ethical and social issues in genomics. It is well known that there is a lack of diversity in both genetics research participants and in the genomics workforce. Making these scientific fields more inclusive is crucial. This will require creating and implementing initiatives that make sure every aspect of genomics better represent racial, ethnic, gender minority and differently abled groups.
Throughout recent years, there has been a resounding call for increased workforce diversity within the genomics community. A session titled ‘Workforce diversity in genomics: Equity and the meaning of inclusion’ at the ASHG 2021 Annual Meeting explored this issue in more detail. Sandra Soo-Jin Lee, Chief of the Division of Ethics at Columbia University, and Stephanie Fullerton, Professor of Bioethics at the University of Washington School of Medicine, moderated the panel discussion, which examined workforce diversity initiatives and how they could be used to drive meaningful change for the genomics community moving forward. Here is an overview of some of the talks within that session.
Bringing change to the genomics workforce
Vence Bonham, National Human Genome Research Institute (NHGRI) Acting Director and Associate Investigator of the Social and Behavioural Research Branch, also gave a talk titled ‘Bringing change to the genomics workforce’. In October 2020, the NHGRI published a new strategic vision for the future of genomics. Within that vision, nine guided principles and values were identified within the genomics community, one of which was to ‘champion a diverse genomics workforce’. Throughout his talk, Bonham explained many of the steps that the NHGRI has subsequently taken to move forward with this vision and to champion diversity within the genomics workforce. For example, in January 2021, the NHGRI Action Agenda was published, which consisted of four steps to help expand the diversity of their workforce.
Increasing equity for indigenous scientists in genomics research
Nanibaa’ Garrison, from the Institute for Society and Genetics at the University of California (UCLA), gave a talk which emphasised how Indigenous people are the most underrepresented group in genomics research. Garrison also noted that there is a deficit in the number of scientifically trained Indigenous people to represent their communities. Native Americans in STEM receive just 0.6% of all bachelor degrees and 0.4% of all doctorate degrees. Moreover, less than 1% of PhDs in genomics-related fields are awarded to natives.
How can this problem be addressed? Garrison suggests that research and leadership that respects the values of Indigenous communities is critically important to increase their representation and engagement with genomics. If there is more support for Indigenous people to go into genomics research as scientifically trained investigators, this in turn may lead to a higher representation of Indigenous people in genomics research as participants. For example, the Summer internship for INdigenous peoples in Genomics (SING) began in 2010. Through its workshops, it has now trained over 130 Indigenous participants from over 50 different tribes or communities. Moreover, the SING program recently received a large National Science Foundation Award to assess the bioethical impact of indigenous scholars in networks.
Reconceiving diversity in the genomics workforce
In another session, Consuelo Wilkins, Senior Vice President and Senior Associate Dean for Health Equity and Inclusive Excellence at Vanderbilt University Medical Center, gave a talk titled ‘Reconceiving diversity in the genomics workforce’. Wilkins questioned why there is now a perception that certain groups of people are underrepresented in scientific fields, including genomics. Is it because of the myths and historic views that people from a certain background start at an inferior place, and so those who make it are some kind of exception? Or is it because we convince ourselves that people from certain backgrounds have less education and hence less ability to achieve or in fact are just less interested in science?
Wilkins went on to explain that these groups are not only underrepresented now, but they have also been historically excluded, marginalised and oppressed. She noted that it is important to remember that these groups of people are just as capable as the majority of scientists today and that they do not need to be supported in different ways. Instead, removing barriers and re-writing policies is what will drive a more diverse workforce in genomics. There are many different strategies that have been put forward for increasing diversity, including mentoring early-career scholars and amplifying the voices of scientists from historically excluded backgrounds.
These talks are just a few examples of the many interesting discussions that took place at ASHG 2021 about the ethical and social issues in genomics. More dialogues like these will help to overcome many of the obstacles in diversifying both the genomics workforce and research in the future.
Image credit: Clinical Lab Manager