Meet Genetics & Public Policy Fellow Nikki Meadows

Posted by: Staff

A warm welcome to Danielle (Nikki) Meadows, PhD, ASHG/NHGRI Genetics & Public Policy Fellow for 2017-18! Dr. Meadows began her first rotation at the National Human Genome Research Institute in August, and we sat down with her this week to find out more about her background and interest in science policy.

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Nikki Meadows, PhD, ASHG/NHGRI Genetics & Public Policy Fellow (courtesy Dr. Meadows)

ASHG: What made you interested in the ASHG/NHGRI Genetics & Public Policy Fellowship, and what are you hoping to get out of it?

Nikki: The endless possibilities and potential ethical pitfalls of genetics, genomics, and their related technologies has always been exciting and fascinating for me to think about. What are the possibilities? Can we actually cure millions of diseases in my lifetime (instead of just hoping we can)? If we do that, what will it cost us? How do we decide what constitutes a “disease”? I’m super short and hate to climb on counters to reach the top shelf – can I save my future children from that fate? But if the super wealthy are the only ones able to afford it, how is that fair? Questions like that were always in the back of my mind while I was pipetting at the lab bench or sitting in the lecture hall hearing about new, cool science.

Then, in my second or third year as a grad student at McGill, I ended up getting involved in student government, lured by the opportunity to represent human genetics students at the university level. My long days in the lab were soon being supplemented with (not quite as) long evenings in board rooms discussing issues that affected grad students and working on policies to help navigate them. Around the same time, my thesis project brought some policy-type discussions into our lab meetings about worldwide folic acid fortification levels. Somewhere in that confluence, I realized that this juncture between science and policy was where I wanted to be, because I could combine two things I was captivated by.

I started poking around online and came across the ASHG/NHGRI Genetics and Public Policy Fellowship, and it seemed an ideal segue from a PhD in Human Genetics to a career in genetics public policy. I’m hoping that this fellowship will allow me find my place in policy, where there are so many stakeholders and perspectives from which to approach it. It’s three-rotation setup is seemingly perfect for that.

ASHG: Tell us about your professional background.

Nikki: I got my bachelor’s degree from Rochester Institute of Technology, where I studied biotechnology with a side of theatre arts and sociology. From there I took a year off to decide what I wanted to do next; specifically whether I wanted to pursue an MD or an MD/PhD or a PhD. To help me decide, I joined John Gottsch’s lab at the Wilmer Eye Institute at Johns Hopkins, and had the opportunity to work in the clinic setting and the lab setting as we were studying the genetic basis of Fuchs Corneal Dystrophy. The lab won out – at the end of the year, I accepted a position in Rima Rozen’s lab at McGill University. Under Rima’s supervision, I completed my PhD in Human Genetics, where I was studying how genes and nutrients affect the outcome of malaria.

As mentioned above, during this time I was also involved in student government at McGill, and in my final year, I was elected to serve as the Financial Affairs Officer at the McGill University Post-Graduate Student Society. Continuing my own trend, I took another year and a half “off” after graduation, and I spent that time teaching math and science back in my hometown.

ASHG: What are your main areas of interest in science policy?

Nikki: STEM/STEAM Education (A for “Arts” because STEM needs creativity), how we bring new genetic technologies to the public and ensure their safety and privacy, and how we keep genetic information from being used to discriminate.

ASHG: Describe yourself in 3 words.

Nikki: tenacious, resourceful, whimsical

Nikki Meadows, PhD, is ASHG’s newest Genetics & Public Policy Fellow. You can find her on Twitter at @dn_meadows. Interested in similar topics? Applications for the 2018-19 fellowship open in January 2018.

ASHG’s New Policy Statement on Human Germline Genome Editing

Posted by: Derek Scholes, PhD, ASHG Director of Science Policy

I am delighted to announce that ASHG’s statement on germline genome editing was published today in The American Journal of Human Genetics. This statement, written by a workgroup co-led by Kelly Ormond and Doug Mortlock and approved by ASHG’s Board of Directors, gives the Society’s perspective on the use of CRISPR/Cas9 or other similar tools to alter the genome of an embryo or germ cell. Importantly, it incorporates feedback that members provided when the workgroup solicited their perspectives early in the writing of the statement.

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The Germline Genome Editing Workgroup asked for member input at the 2015 Business Meeting, before developing draft recommendations and writing the statement. L-R: Douglas Mortlock, Kelly Ormond, William (Andy) Faucett, Rosario Isari, Kiran Musunuru, and Lawrence Brody.

The statement makes three main points:

  1. Concurring with many in the scientific community who have considered this question, it declares that it would be inappropriate at the present to carry out germline genome editing culminating in pregnancy, given the many questions about its safety and the associated ethical issues.
  2. However, it says we should allow in vitro germline genome editing as part of research to explore possible future clinical applications, and there should be no prohibition on the use of public funds for this research.
  3. That said, it makes clear that the Society believes germline genome editing should only ever be performed in humans if several important criteria are met. There needs to be not only a compelling medical reason, backed up by a strong evidence base, but also the ethical and policy questions need to have been addressed through a public process.

ASHG did not reach these conclusions alone. Rather, the workgroup that wrote the statement included representatives from the Association of Genetic Nurses and Counsellors, the Canadian Association of Genetic Counsellors, the International Genetic Epidemiology Society, and the National Society of Genetic Counselors. These organizations endorsed the final statement, as did the American Society for Reproductive Medicine, the Asia Pacific Society of Human Genetics, the British Society for Genetic Medicine, the Human Genetics Society of Australasia, the Professional Society of Genetic Counselors in Asia, and the Southern African Society for Human Genetics. The statement is all the more powerful for enjoying support from such major organizations from across five continents, that represent a variety of scientific and clinical perspectives.

This position statement is the latest in a series that the Society issues periodically on a range of genetics policy issues and different uses of genetic information. If there is a topic that you would like the Society to consider addressing, please let us know by emailing policy@ashg.org.

Derek Scholes, PhD, is ASHG’s Director of Science Policy. To learn more about ASHG’s policy priorities and positions, visit the Policy page.

A New Policy Platform for ASHG

Posted by: Derek Scholes, PhD, ASHG Director of Science Policy

We are delighted to announce that ASHG has a new policy platform! Developed with the help of members and approved by the Board of Directors, the platform articulates where ASHG stands on a variety of policy issues – which issues are of key importance and our positions on those issues. It will provide direction for the Society’s policy and advocacy activities, and will be essential for communicating our policy perspectives to lawmakers and other stakeholders.

The platform covers four different policy categories that collectively capture the broad scope of ASHG’s policy interests. They are the conduct of genetics research, genetics in healthcare practice, societal uses of genetics, and the teaching of genetics and genetic literacy. Within each of these categories are highlighted a number of key issues, together with relevant statements that the Society has published. We define key issues as those that are consistent with our mission and where we can have an influential role.

Altogether, 17 key issues are listed. Of course, it will not be possible to address all of these at the same time. Rather, we’ll focus our energies according to the evolving policy environment and the prevailing needs of members. For example, in the past month, we’ve partnered with other societies within the Federation of American Societies for Experimental Biology to advocate for increased funding for biomedical research on Capitol Hill, especially timely given proposed cuts to NIH funding by the Trump Administration. We have also been drumming up opposition to the Preserving Employee Wellness Programs Act (H.R.1313), a bill introduced last month that would fundamentally undermine important provisions in the Genetic Information Nondiscrimination Act. Plus, we’ve been speaking out about the potential impact of proposed new travel restrictions to the U.S. on the international scientific community and the research enterprise.

In order to be successful in any of these advocacy activities, we need your help! To facilitate this, we have created a new Take Action page. Currently, you can visit the page to sign on to a letter opposing H.R.1313 and also let us know how the proposed immigration restrictions are impacting you. We’ll keep you updated as we continue to develop this.

Derek Scholes, PhD, is ASHG’s Director of Science Policy. For questions regarding ASHG’s policy and advocacy activities, email policy@ashg.org.