Life as a Genetics & Public Policy Fellow: Hello from the Hill!

Posted By: Eve Granatosky, PhD, ASHG/NHGRI Genetics & Public Policy Fellow

Around this time last year, I was putting the finishing touches on my dissertation and trying to coordinate a date for my thesis defense. This week, I helped prepare a United States Senator for an event on drug pricing and met with constituent groups on issues ranging from cancer research to school nutrition. This dramatic and exciting shift was only possible because of the ASHG/NHGRI Genetics & Public Policy Fellowship.

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Checking out the best view on the Hill from the Speaker’s Balcony. (courtesy Dr. Granatosky)

Throughout most of my time in graduate school, I knew that I wanted to pursue a career in science policy, and was looking for an opportunity that would allow me to apply my scientific expertise in rare diseases and preclinical drug discovery in a policy setting. The Genetics & Public Policy Fellowship was a great fit with my background and interest in exploring multiple spaces within the policy world. So far, I’ve had the chance to work in both the executive and legislative branches of the U.S. government, and later this year I’ll complete my fellowship with the Policy and Advocacy team at ASHG. I’m currently about six months into my fellowship, and am happy to report that the experience so far has been just as excellent as I had hoped.

Budgetary and Strategic Planning at NHGRI

I started my fellowship in September within the Policy and Program Analysis Branch (PPAB) at the National Human Genome Research Institute (NHGRI). Right away, I got to jump into several projects the branch was working on, including drafting the Institute’s Fiscal Year 2020 Congressional Budget Justification, an important step in NHGRI’s being funded each year. This was a great way to learn about many of the research projects funded by NHGRI and write about them in a way that was concise, engaging, and accessible. I also helped organize feedback from the wider genomics community that was collected as part of NHGRI’s ongoing strategic planning process.

A highlight of this rotation was presenting a poster at the annual NHGRI Symposium. My PPAB colleagues and I described some recent studies on public perceptions of the use of genetic data by law enforcement (particularly for solving cold cases) and discussed potential policy options to address genetic privacy. After surveying symposium participants on their own views on this topic, we learned that while the NHGRI community was mostly supportive of the use of genetic data for law enforcement for solving crimes, they overall reported having more concerns about their genetic privacy than do members of the general public who have been surveyed.

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PPAB’s Devona Perrineau and I getting ready to talk about genetic privacy and poll the symposium attendees. (courtesy Dr. Granatosky)

A Wide Range of Health and Education Topics on the Hill

This January, I started my second fellowship rotation, in the office of Senator Richard Blumenthal from my home state of Connecticut. I work with two other staffers on the health and education portfolios, including issues related to biomedical research. Within the health space, I’ve worked on a wide range of issues, including antibiotic stewardship, e-cigarettes, prescription drugs, and dietary supplements. In education, I’m working on issues related to social and emotional learning and oversight of predatory colleges and universities.

So far, I’ve been involved in both long-term projects in these areas as well as the day-to-day business of the office. I really enjoy getting to meet with Connecticut constituents to discuss their priorities and concerns – I feel like I learn something new every meeting and it’s fascinating to get to hear about so many different topics.

Another major part of my job as a fellow is drafting bills, letters, memos, and briefings for the Senator to help him prepare for events. Putting together memos and briefings is probably where my research and analysis skills from graduate school are most valuable. These documents need to succinctly synthesize what a particular event is about, what stakeholders are involved and what their perspectives are, what past legislative or oversight work the Senator has done in that issue area, and what message he should try to get across in his remarks. Overall, I really like the pace of my office and the scope of issues I work on, and I’m looking forward to what the next few months will bring!

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Meeting visitors from Connecticut is one of my favorite parts of my fellowship rotation on Capitol Hill. (courtesy Dr. Granatosky)

Applying My Scientific Training in a Policy Environment

As I look back on the past six months, I realize how valuable this fellowship has been for my career and professional development. I’ve solidified my interest in pursuing a path in science policy, and thought more specifically about what kind of professional positions I might like to pursue in the future. I’m constantly refining my communication skills, particularly in writing for different audiences and purposes. I’m improving my project and time management skills, and learning to how to prioritize short- and long-term goals. Maybe most importantly, I really like what I’m doing! This fellowship has shown me first hand that I can apply my scientific training outside of a research environment in a way that’s both personally and professionally fulfilling.

I would definitely recommend this fellowship to any early career genetics professionals who are interested in careers in policy. Beyond getting to do the kind of awesome work I talked about here, you’ll benefit from mentorship and support from the whole community of fellowship alumni. Thank you to ASHG and NHGRI for making this experience possible, and I can’t wait to see what the rest of my fellowship brings!

Interested in applying for the ASHG/NHGRI Genetics & Public Policy Fellowship? Applications are open through April 19.

DNA Day on April 25: An Opportunity to Engage

Posted By: Ann Klinck, Communications and Marketing Assistant, ASHG

National DNA Day started in 2003 to commemorate the completion of the Human Genome Project and engage communities with science. Last month, ASHG hosted the webinar “Take Initiative: DNA Day Engagement and You,” which covered how to get involved, resources, and best practices.

Listeners were joined by moderator Maurice Godfrey, Incoming Chair of ASHG’s Information & Education Committee; Carla Easter, Chief of Education and Community Involvement at the National Human Genome Research Institute (NHGRI); and Christina Vallianatos, Founder and co-Director of Michigan DNA Day.

Importance of Science Engagement

Public engagement with science is imperative every day, but DNA Day provides the opportunity to make it a priority. Christina explained that her organization’s mission helps demystify science for students, and that “Many scientists’ careers aren’t linear. The simple act of awareness can help students know what other fields are out there in science outside of doctors and nurses.”

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Michigan DNA Day has grown tremendously in a short time, showing that not only is science engagement important, but people enjoy it! (courtesy Ms. Vallianatos)

Ways to Get Involved

The speakers outlined numerous ways and resources for involvement:

National Events: Carla described larger DNA Day-related events that NHGRI oversees. Students are able to visit the NIH Campus and go on lab tours, and NHGRI facilitates interactive programming with the Smithsonian Institute, a lecture, and a seminar series. Past events are listed online, and 2019 events should be available soon.

Maurice encouraged listeners to get involved in ASHG’s Annual DNA Day Essay Contest. This year’s contest addresses the disclosure of a genetic diagnosis to one’s family. Participating students can win cash prizes and funding for their science programs at school.

Local Events: Christina’s program is localized to Michigan, but many other states offer events like it. If your state does not have an organization in place, scientists could simply reach out to their local schools and offer to speak with them for one class period. Teachers should also not be hesitant to reach out to professors at local colleges. Christina said, “Keep it simple! If you just make one contact at one school, it was worth the effort, because it will have an impact.”

Resources & Best Practices

The speakers provided several resources, including:

An overarching theme was to make your interactions as hands-on as possible. Christina says that when engaging with students, it should be “less about teaching and more about the interaction with science.” If students are given something physical to do, it’s more likely to stick with them.

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Michigan DNA Day’s scientists out in a high school classroom.(courtesy Ms. Valliantos)

Similarly, Maurice kept activities hands-on and interactive when developing a DNA Day program for the Omaha Zoo and Aquarium’s “Key to Diversity in Animals and People Festival,” a larger event that lasted a whole weekend.

Want to get involved or find more resources? Email ASHG at dnaday@ashg.org, NHGRI at dnaday@nih.gov, or Michigan DNA Day at midnaday@gmail.com.

Submissions for the ASHG DNA Day Essay Contest are due March 8, 2019! If you’re a member of ASHG and interested in getting involved in science engagement, sign up for the Genetics Engagement & Education Network or contact education@ashg.org.

Pivoting Your Career Toward Science Policy and Advocacy

By: Staff

ASHG and the National Human Genome Research Institute (NHGRI) co-sponsor the Genetics & Public Policy Fellowship to give genetics professionals an opportunity to contribute to the policymaking process. If you’re interested in the development and implementation of genetics-related health and research policies at a national level, then this Fellowship may be right for you. Applications are open now through April 19, 2019.

Questions about what the position is like? Read on for real-world details from past Fellows about their experiences.

How is the position structured?

The Fellowship lasts for 16 months, during which time the Fellow rotates through three positions within the Policy and Program Analysis Branch of NHGRI, a congressional office of a member of Congress or a committee, and the Policy & Advocacy Department at ASHG. This allows Fellows to gain experience in different roles of national policymaking and decide which aspects of policy and work settings they are interested in pursuing as a career.

2016-17 Fellow Christa Wagner said, “The ASHG/NHGRI Fellowship has provided me with a diverse array of experiences, both in terms of topics covered and settings in which I worked on policy. The Fellowship provides an exceptional experience for those with a background in genetics to play a role in effective policymaking.”

Cari Young, 2015-16 Genetics & Public Policy Fellow, walks us through her experiences.

What kind of work will I do? 

While it depends on the needs of each organization at the time of arrival, 2017-18 Fellow Nikki Meadows gave us a look into her work during two of her rotations through several blog posts.

Nikki Meadows 2017-18 Policy Fellow
2017-18 Fellow Nikki Meadows discusses advocacy with members.

During her rotation with the Senate HELP Committee, Nikki organized a panel of genetics experts to answer questions from congressional staff working on health issues. This allowed her the opportunity to network with seasoned geneticists and help enhance the scientific knowledge of congressional staff. At ASHG, Nikki also provided updates to members on important policy issues such as the federal biomedical research budget  and genetic privacy. She additionally promoted the ASHG Advocacy Center and encouraged scientists to make use of these vital tools, both at the 2018 Annual Meeting and through online forums.

While these certainly weren’t all of Nikki’s duties, she explored several areas of work with a variety of audiences. Nikki said, “I had some amazing opportunities during the course of this Fellowship. I’ve gained so much from this program, both personally and professionally, that I am forever changed by it.”

Will this position help further my career? 

The rotational aspect of the position is a huge bonus to many applicants. 2015-16 Fellow Cari Young said, “This Fellowship provided a unique opportunity to take on varied roles within the science and health policy landscape, allowing me to experience the pros and cons of working in each setting and helping me to crystallize my thinking on where I might want to go next. It also made me a more marketable applicant for policy positions beyond the Fellowship.” As Fellows gain experience in different areas of public policy in just 16 months, it is a vital starting point that lays a solid base.

Being a Fellow additionally opens a new professional network to benefit from. 2012-13 Fellow Laura Koontz said, “Not only has the experience been invaluable, the network of Fellows I’ve joined as an alumna are among the best policy professionals in D.C. The Fellowship has also allowed me to fully realize my commitment to bettering the lives and treatment of people with cancer – the reason I got into scientific research in the first place!”

What kind of jobs might I get afterwards?

Check out our policy fellowship page to see where all our past Fellows are working now! Our Fellows have gone on to positions at the National Institutes of Health, the U.S. Food and Drug Administration, the White House, and a number of other organizations focused on science and health.

Applications are open now through April 19, 2019. Apply today!

ASHG Joining Forces with Groups across Broad Science and Medicine Community

Posted By: Mona Miller, ASHG Executive Director

ASHG is increasing our direct national and international collaboration to achieve results for the human genetics and genomics community. While we are already pursuing strategic action with several genetics and genomic partners on priorities from the recent ASHG member survey, we also are working to identify key strategic partnerships across the wide spectrum of science and medicine. This week, we are especially pleased to announce our participation with some crucial new allies. In months to come, continue to check out new partnerships and collaborations as we grow our work to serve you and the field.

ASHG has joined the American Association for the Advancement of Science (AAAS) as an affiliate. At a time when fact and evidence face challenges on a global scale, the entire community is working to advance evidence-based information. We are strengthened and more united through AAAS, which is building and launching new advocacy strategies for science at the national and local levels. They also serve as key convener for scientific societies across the physical and life sciences and helped spark a national collaboration to combat sexual harassment in STEMM. Importantly, they are also enhancing their work to arm journalists with accurate information about emerging science, including human genetics, and last month’s AAAS Annual Meeting showcased multiple promising studies and challenging questions in our field. We are excited to explore how we can connect into their broader efforts, partner with their global voice, and use resources to help our members communicate and advocate for the tremendous progress and promise of science. Keep an eye out for more information and our recent Q&A with AAAS CEO Rush Holt.

ASHG has joined the Societies Consortium on Sexual Harassment in STEMM. The ASHG Board of Directors is committed to creating a welcoming and safe community within our human genetics and genomics field, and we were very pleased to introduce our new ASHG Annual Meeting Code of Conduct last year to clearly state our expectations for behavior within our events. Yet we know these issues are pervasive and deep seated and will need sustained attention across fields and disciplines. Building on a crucial recent report from the National Academies, the Consortium will unite societies on these issues and help all of us adopt and promote policies and procedures that foster diverse, inclusive, and equitable academic and medical environments. ASHG took part in early dialogue as the consortium was forming last fall, and the group now includes nearly 60 societies, led by groups that include AAAS, the Association of American Medical Colleges and the American Geophysical Union.

We look forward to partnering with these new allies as we work to advance the field of human genetics and genomics!

Announcing: The Genetics Engagement & Education Network

Posted by: Alexis Norris, PhD, Member of ASHG Information & Education Committee

I’m pleased to share that the ASHG Information & Education (I&E) Committee has revamped the previous Genetic Education Outreach Network (GEON) program as the Genetics Engagement & Education Network. The purpose of this program is to create a network for ASHG members to engage and educate. Members of the network will receive a quarterly newsletter, have access to a toolkit of educational resources vetted by the I&E Committee, and have their name added to the Network directory. The directory can be used by ASHG members to find speakers and collaborators, and by the public to connect with members about human genetics-related questions. Questions often range from visiting a classroom, to hosting a field trip, to offering academic and schooling advice.

In our world of wide-reaching, fast paced, and bite-sized communication, we are faced with communicating our science to many audiences, from fellow scientists in our field to the lay public. It is challenging to share information in a way that it is both approachable and understandable. Engaging in education outreach can improve your science communication, through the experience of deconstructing complex concepts into their digestible parts, and identifying what sparks the audience’s interest.

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Hands-on activities using real world examples, such as this one on identifying fish species using DNA sequences collected in Atlantic Ocean, help students understand genetics and genomics concepts. (courtesy Dr. Norris)

The toolkit and newsletter will also give members access to new ideas about how to communicate and educate. ASHG members can enroll in the Network through the ASHG portal indicating their geographical region and outreach audiences of interest (e.g., high school, college, or general public).

For teachers, inviting an ASHG member to their classroom has immediate and clear benefits for their students. First, the activity can be timed to coincide with genetics lessons, thus reinforcing concepts and their applications. The ASHG member also provides a tangible example of a career path in genetics, and a potential resource and networking connection for the students.

Why I Find Genetics Outreach Rewarding and Impactful

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Students at Fort Hill High School in Allegheny County, MD, participate in an outreach activity. (courtesy Dr. Norris)

I got involved with genetics outreach during my graduate training. Over the last eight years of outreach in high schools across the state of Maryland, I have found that I have the biggest impact on students in rural regions that are far from research institutions, where the students have limited exposure and access to genetics research. At the ASHG Annual Meeting in San Diego last fall, I spent two days before the meeting in Ms. Heather Gastill’s biology classes at the local Mission Bay High School. I had the students identify fish by DNA sequences on paper slips, using real sequencing data from Thomsen et al. For thirty minutes, the students helped each other decode the 100 sequences, creating a barplot of the frequency of different fish species on the classroom whiteboard.

My favorite moment was when each class: (1) calculated the time it would have taken them to go identify the full dataset (millions of sequences), (2) laughed at the absurdity of how long it would take them, and then (3) was mesmerized by my slide that showed how I did it in a couple of hours on my laptop with just a few sentences of bioinformatics code. After each class, a few students would ask me how they can become a bioinformatician. That is why I love genetics outreach.

Ready to join the Genetics Engagement & Education Network? Learn more on the ASHG website.

Alexis Norris, PhD, joined the ASHG Information & Education (I&E) Committee during her postdoctoral training at the Johns Hopkins School of Medicine. She is currently a Bioinformatician at the Food and Drug Administration (FDA).

AAAS 2019: Science Transcending Boundaries

Posted by: Eve Granatosky, PhD, 2018-19 Genetics & Public Policy Fellow

Earlier this month, I attended the Annual Meeting of the American Association for the Advancement of Science (AAAS), held right here in Washington, DC. Themed ‘Science Transcending Boundaries,’ the program featured sessions on how science can bring together people, ideas, and solutions from different disciplines and sectors to address the world’s most pressing problems. This conference was very different from others I’ve attended in the past, which have focused on one specific scientific area. The AAAS Meeting also had a strong focus on science policy and communication, and I was excited to attend those sessions as well as explore scientific talks in different areas.

A common theme across the policy and communication sessions was the importance of understanding your audience – what are their priorities, and what information is valuable and relevant to them? At one session, panelists discussed the many legitimate influences on policy and policymakers, and how scientific evidence is usually only one factor that contributes to decision making. In another, panelists spoke about the challenges of getting usable scientific information to policymakers, and described the important role of boundary organizations that span the science-policy interface in facilitating effective two-way communication. Later on in the conference, panelists discussed how science is frequently used strategically rather than substantively in policy (i.e. to support an existing position rather than develop that position).

The final session of the conference brought many of these ideas together. In “Science Activation: How Do We Get Our Science Used by Those in Power?”, seismologist Lucy Jones reflected on her experience in successfully working with local government and private industry in Los Angeles to better prepare the city for future earthquakes. Her tips and lessons included:

  • Scientists and non-scientists have different communication styles, and scientists’ emphasis on uncertainty can hinder effective communication.
  • Use scientific information to reduce uncertainty whenever possible, by focusing on describing future scenarios based on scientific consensus rather than the probabilities of potential outcomes.
  • Provide policymakers with actionable information to empower them to make decisions, and maintain relationships with stakeholders throughout the process.
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At the final session of the AAAS Annual Meeting, Lucy Jones, PhD, and AAAS President Margaret Hamburg, MD, discussed how human stories help engage the public on scientific issues.

Another policy-related highlight of the meeting was an appearance by Kelvin Droegemeier, PhD, the newly confirmed head of the White House Office on Science and Technology Policy. In his first public speech since assuming this position, he highlighted the progress made in science and technology during the Trump administration, including advances in artificial intelligence, quantum sciences, 5G networks, and manufacturing. He also emphasized the role of the private sector in supporting basic research, and the value of assessing all work being done in our country’s research ecosystem, including research in the academic, industrial, nonprofit, and federal agency sectors. By leveraging the strengths of each sector to build new public-private partnerships, he hopes to usher in a “second bold era” of science in the United States. Finally, Dr. Droegemeier acknowledged the need to create safe, welcoming, and accommodating environments for research, as well as to reduce administrative burden for scientists.

The need to improve the climate within science was also addressed at a session entitled “Societies Combatting Sexual Harassment in STEMM Fields,” which formally introduced the Societies Consortium on Sexual Harassment in STEMM. This group of almost 60 scientific societies (including ASHG!) plans to develop resources and guidance to address sexual and gender harassment in all its forms, in both society-organized operations like conferences and broadly within the societies’ scientific fields.

Between all of this excellent policy programming, I attended some great scientific sessions as well, on topics ranging from vaccine development to space exploration. Genetics was best represented at a session entitled “Race, Sex, and Genes: Shaping Bodies, Shifting Boundaries, Challenging Myths,” which delved into how social and biological factors intertwine to contribute to health disparities. Panelists discussed how human genetic variation does exist, but is distributed more geographically and as a gradient than on the strict racial lines dictated by society. They also discussed the complexities of consumer genetic tests in relation to group identity, saying that these tests can be valuable for marginalized people looking to reconnect to their ancestral communities, but should not be used to claim group membership.

Overall, I really enjoyed my time at AAAS 2019! I would highly recommend future editions of this conference for anyone who is interested in science policy and communication, or who is interested in expanding their scientific horizons and learning about new topics.

Eve Granatosky, PhD, is the 2018-19 ASHG/NHGRI Genetics & Public Policy Fellow. She is currently in her second rotation in the United States Congress, working on health and education issues for Senator Richard Blumenthal. Interested in this fellowship? Applications will open in late February.

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

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

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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.

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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?”