What Difference Does Difference Make? An ASHG/FASEB Event on Diversity in Science

Posted by: Nalini Padmanabhan, MPH, Communications & Marketing Director, ASHG

Shirley Malcom
Shirley M. Malcom, PhD

“Diversity is a scientific imperative,” said Vence Bonham, JD, in his introductory remarks to last week’s ASHG/Federation of American Societies for Experimental Biology (FASEB) event, titled “What Difference Does Difference Make?”. The event featured keynote speaker Shirley M. Malcom, PhD, Head of Education and Human Resource Programs at the American Association for the Advancement of Science (AAAS), who led an informative, interactive, and spirited discussion among nearly 70 staff at ASHG, FASEB, and several other FASEB member societies.

With strong board support, ASHG is already undertaking steps within our community to improve diversity and inclusion in science and exploring additional efforts. By sharing ideas and feedback with AAAS, FASEB, and other scientific societies, who face similar challenges and operate in similar environments, we are committed to building on successful strategies to raise our collective effectiveness.

Diversity in Genomics Research and Among Researchers

Dr. Bonham, Chief of the Health Disparities Unit at the National Human Genome Research Institute (NHGRI), set the stage by describing the importance of diversity in genomic research cohorts and in the genomics workforce. He cited several studies showing that the vast majority of genome-wide association studies (GWAS) and genetics-based disease studies in the public domain focused on populations of European ancestry. Though there has been some change in recent years, he noted, populations of African, Latin American, and Asian ancestry are still significantly underrepresented.

Diversity in the scientific workforce follows similar patterns, he explained: data show the relative representation of African American scientists declines at each step along the career path, from graduate school applicant all the way through department head.

Access to Scientific Opportunity, Power, and Science as a Human Right

“The challenge we have in this country is that we are both too polite and too impolite. There are things we don’t talk about because it makes us uncomfortable, and part of the challenge we have had is that we have not been honest in our discourse,” said Dr. Malcom, framing her discussion. “Inequalities related to sex, gender, race, and ethnicity are all part of the same issue, which is the distribution of power. We don’t talk about power much, but it drives much of what we see that we do not like,” she explained.

The 1948 Declaration of Human Rights, recognized explicitly by most countries, includes the right to the benefits of scientific progress. Furthermore, she said, scientific curiosity is part of being human, and unequal access to a scientific career reflects differences in power within the field and the educational system. For example, those who set the research agenda define which questions the field considers important, how findings are assessed, and how success is attained. These decisions tell an implicit story about what science is, who science belongs to, and who can do science.

Dr. Malcom & Dr. Bonham
Dr. Malcom & Dr. Bonham lead a Q&A

Diversity Discussions Have Improved but Challenges Remain

Taking a historical perspective, Dr. Malcom traced how discussions of diversity have evolved since the 1960s and 1970s. Originally considering it solely as a legal issue related to civil rights, many started to improve inclusivity out of need – demographic shifts and a growth in research required more talent in the workforce. More recently, there is growing appreciation of the educational value of diversity as well as the innovation driven by a variety of perspectives and experiences.

“Today, women are the majority of students in higher education but not of the faculty,” she said. “There’s a mismatch between who is there and who teaches them, which affects the climate of the classroom. We need to create a new normal.”

Structural barriers and biases impede progress toward that new normal. These include difficulty in finding community and cultivating a sense of belonging, systematic undervaluing from faculty and peers, and a false assumption that difference equals deficiency.

That starts from admissions, she explained. “We have to get to a point where our programs recognize potential, not previously demonstrated performance, because not everyone has had the opportunity to actually be able to be successful in tests that we use to measure.”

Strategies and Current Efforts to Improve Diversity

Given these challenges, what can scientific societies do to improve diversity? Dr. Malcom offered several practical strategies. These include several activities that are increasingly front and center for ASHG. This year, we are beginning to track and emphasize greater diverse representation in our Annual Meeting program, and are working actively to promote more nominations and inclusion of diverse candidates for roles in society leadership and awards.

ASHG also will be exploring ways we can leverage and share with the field the learning, resources, and strategies of other leading groups, including SEA Change, an AAAS effort to support diversity and inclusion in STEM, especially in colleges and universities. It focuses on science departments and programs, helping them to identify unhealthy factors and instill best practices that create healthy cultures and foster diversity.

While the issue is complex, Dr. Malcom is confident the outlook is positive and sees more potential for progress in the scientific community. “We have evolved in the way we think about diversity in science. Now I think we are at a point where we can begin to talk about diversity, equity, and inclusion as central for excellence in research,” she said. “We all have our biases, but the question is: what do you do in spite of them and how do you overcome them?”

Announcing: AJHG “Perspectives” Series on Issues Confronting Human Genetics and Influencing Research

Posted By: David L. Nelson, ASHG President 

As part of our ongoing commitment to address how genetic findings are used in society and to foster discussion within the field and the public, I am pleased to announce that ASHG is launching a new “Perspectives” series of short statements this month, which will be published periodically in The American Journal of Human Genetics.

The first topic targets disturbing and scientifically flawed attempts to link genetics with racial supremacy. The statement denounces such attempts, stating that there can be no genetics-based support for claiming one group to be superior to another.

Read the statement on AJHG’s website.

We decided to address this important issue in the series’ first statement, recognizing that there has been a resurgence of bogus claims that racial supremacy has scientific roots. The statement explains that humans cannot be divided into biologically-distinct subcategories, given the considerable genetic overlap among members of different populations, and asserts clearly that genetics exposes the concept of ‘racial purity’ as scientifically meaningless.

This statement reflects a continuation of ASHG’s objection, over decades, to the misuse or twisting of human genetics findings for political or social ends, including past ASHG statements on genetics, ancestry, and intellectual ability and the consequences of eugenics; and more recently, my piece in the September member newsletter on the Society’s origins and early discussion of its purpose and role.

AJHG Perspectives: A Channel for Timely Discussion

Statements in the new series will address a variety of important topics in human genetics and its interface with society, reinforcing the Society’s and Journal’s role as a leading source of emerging human genetics science. They will offer timely, concise viewpoints on topics in research, health, and society that have been prioritized by the Board; will address how scientific research informs those issues; and may assert Society policy positions or note important related field activities.

Statements will also refer readers to a range of lengthier academic or other relevant work. They do not strive to cover the breadth and depth of each issue but rather to draw on, complement, and highlight the need for continuing research and member engagement.

AJHG has long been a leading home for discussion and debate about emerging science across human genetics. We are enthusiastic about this new feature, which will help ensure that scientific facts, findings, and open discussion inform larger societal dialogue,” said Bruce Korf, MD, PhD, Editor-in-Chief of AJHG.

Read an editorial announcing the new Perspectives series.

Fostering Discussion Within and Outside the Scientific Community

As research in human genetics continues to advance, it is opening new pathways of understanding and treatments that are saving lives. At the same time, ASHG has long been committed to addressing how these findings may be used in society, and we hope this new series will spark individual scientists to be increasingly vocal in discussing what the science does, might, and doesn’t say about a wide range of important issues, even—perhaps especially—when there is disagreement.

Individual members of our Society are knowledgeable, thoughtful, outspoken, and diverse in their views – these are the traits that push our field forward and help us collaboratively and thoughtfully address complex issues. Members, I encourage you to speak out, in your own voices, to represent your individual views as genetics experts on this and other important topics.

Given ASHG’s broad community of researchers, clinicians, ethicists, and other professionals, we anticipate perspectives on many topics may spark a diversity of dialogue, with strongly held perspectives on the science. We look forward to continuing that discussion through the pages of AJHG and hope to spark ongoing, constructive dialogue in the laboratory, classroom, clinic, and across the broad range of colleagues interested in human genetics.

David L. Nelson, PhD, is President of ASHG. He is a Cullen Foundation Professor of Molecular and Human Genetics at the Baylor College of Medicine, Associate Director of the BCM Intellectual and Developmental Disabilities Research Center, and Director of the BCM Integrative Molecular and Biomedical Sciences Graduate Program. 

Announcing: Your 2019 ASHG Board of Directors

Posted By: Staff

We are pleased to announce the results of this year’s American Society of Human Genetics Board of Directors elections. Thank you to all who voted! Members elected a new president-elect and three directors.

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For details on the new Board members’ background, experience, and research interests, see the Election Bios. The new Board members will assume office on January 1, 2019, and will serve three-year terms.

A warm welcome to our new leaders!

Presenting: ASHG 2018 Award Winners

Posted By: Staff

We are pleased to announce this year’s ASHG awardees! Awards will be presented at the ASHG 2018 Annual Meeting this October in San Diego. Thank you to all the nominators, and congratulations to our recipients!

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For details on the awards process, please see our awards page. To view when each award will be presented, see the meeting schedule of events.

DNA Day Wins ASAE Power of A Award

Posted By: Mona Miller, ASHG Executive Director

DNADay-asae-medal_ (002)

We are pleased to share that our National DNA Day Essay Contest has received an ASAE Power of A Silver Award. These awards recognize a select number of organizations annually that distinguish themselves with innovative, effective, and broad-reaching programs that positively impact the United States and the world.

ASHG’s DNA Day Essay Contest began in 2005 and is open to students in grades 9-12 around the world. Participants are encouraged to work with their teacher to write a 750-word essay responding to the year’s question. The question is selected with the goal of pushing students to examine, question, and reflect on important concepts in genetics, which are not normally covered in a typical high school biology curriculum. The goal of the question is for students to expand their knowledge of human genetics and to use evidence-based critical thinking in their response.

The contest has grown from around 300 essay submissions in its first years to over a thousand submissions in 2018. This year, ASHG received essays from 43 U.S. states and 23 countries who explored how genetics is informing, shaping, and changing our lives, after which more than 350 ASHG members evaluated the results for accuracy, creativity, and writing.

The contest also engages our members, who act as reviewers and judges for the contest, in an activity that ties them to public outreach and creating the next generation of geneticists. Each year, around 500 members volunteer for this rewarding and worthwhile experience.

The DNA Day Essay Contest has become a signature of ASHG and we are proud of the high number of participants and member volunteers, the satisfaction of our volunteers, and the chance to expand students’ education of human genetics.  We are thrilled to have been recognized for this long-standing program that is an embodiment of ASHG engagement and creativity.

A big thank you to all teachers, students, and member volunteers who have participated over the years!

 

ASHG Affirms Essential Role of International Travel, Global Participation for Scientific Advancement

Posted By: David L. Nelson, 2018 President

In light of the United States Supreme Court’s decision to uphold the White House’s 2017 Executive Order limiting travel for citizens of select nations, I want to affirm, on behalf of the membership of our Society, that we remain committed to the knowledge that research in the U.S. benefits greatly from the presence and full participation of international researchers in laboratories around the country and world.

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ASHG noted in our March 2017 statement opposing the ban that nearly one-third of  members reside outside the U.S., and that cross-pollination of ideas across borders is essential for sparking new avenues of inquiry and establishing partnerships. The diversity of experience, perspective, and expertise that comes from a globally connected research community moves science forward, and that benefits all of us. As 2017 ASHG president Nancy Cox noted so eloquently at the time, as geneticists, “we are all students of human variation and we value – indeed, celebrate – the diversity that has contributed to our survival as a species.”

We affirm our commitment to serve and support the international human genetics community and continue to welcome participation of scientists from all nations in the Society’s work and events.

David L. Nelson, PhD, is 2018 President of ASHG. He is a Cullen Foundation Professor of Molecular and Human Genetics at the Baylor College of Medicine, Associate Director of the BCM Intellectual and Developmental Disabilities Research Center, and Director of the BCM Integrative Molecular and Biomedical Sciences Graduate Program.

Welcome HHMI-ASHG Fellow, Sarah Abdallah

Posted By: Ann Klinck, ASHG Communications and Marketing Assistant

ASHG is excited to be partnering with the Howard Hughes Medical Institute (HHMI) for the HHMI-ASHG Medical Research Fellowship. We’re happy to welcome third-year Yale medical student, Sarah Abdallah, to the position.

Sarah Abdallah headshot
Sarah Abdallah, HHMI-ASHG Medical Research Fellow (Courtesy Ms. Abdallah)

This program allows medical, dental, and veterinary students to take a year off from training and perform mentored laboratory research with support of a grant. “Our hope is that the experience will ignite students’ passion for research and encourage them to pursue careers as physician-scientists,” says David Asai, HHMI’s senior director for science education in a press release.

Sarah was interested in the fellowship because “it seemed to provide access to a community of scientists and to enriching experiences on top of my research, like attending conferences and meetings.”

Sarah’s research is focused around obsessive compulsive disorder (OCD). Specifically, it involves looking for post-zygotic variants in whole-exome sequencing data from individuals with OCD and their parents. These variants arise spontaneously and are not inherited from parents. By identifying the post-zygotic variants, it may be possible to understand the contribution of such variation to OCD development, identify risk genes, and eventually find new treatments.

“I am hoping this project will contribute to the collective understanding of the genetic basis of OCD. Many people with OCD do well, but I have seen firsthand how it can present as a very disabling, persistent disorder, and current pharmacologic treatments are not completely effective for all patients,” Sarah said.

ASHG member and Sarah’s primary mentor, Thomas Fernandez, MD, is an assistant professor in the Child Study Center and of Psychiatry at Yale. Another ASHG member and her co-mentor, James Noonan, PhD, is an associate professor of genetics at Yale.

During her fellowship, Sarah is hoping to gain more experience in computational genomics and is seeking guidance on how to combine her clinical and research interests into a career. She trusts that people like Dr. Fernandez will be able help her find the right path. She is considering a career in child psychiatry and pediatrics, but “either way, I hope to keep contributing to research on the genomics of neurodevelopmental disorders along with my clinical practice,” she said.

Launched 29 years ago, the HHMI Medical Research Fellows Program supports each Fellow through a year-long research project with a mentor of the Fellow’s choosing, and facilitates peer networking among Fellows and alumni as well as seminars with senior investigators. For more information, see the Program website.