Today we’d like to introduce you to Carol Isaacson Barash.
Thanks for sharing your story with us Carol. So, let’s start at the beginning and we can move on from there.
It started with a love of innovation, a deep interest in healthcare and the desire to help the sick and disenfranchised. Initially, as a minted Ph.D. in philosophy, I sought to combine my interests in a health policy career. However, when I was invited to direct the first nationwide and federally funded (NIH/DOE Ethics, Legal and Social Issues, (ELSI) study of genetic discrimination- discrimination against individuals based on their genotype- not phenotype- I discovered issues and concerns that resonated with who I am and what I care about.
Study results, in other words, not only identified a broad range of contexts in which individuals reported discrimination but clearly evinced the need for laws and regulation to prevent a social underclass of ‘genetically undesirables’. Moreover, the results were very impactful. Findings were of great interest to large number of media outlets as well as advocacy groups, such as Hadassah who worried about the impact of hereditable risk for Jewish people, especially breast cancer for those of Ashkenazi descent as well as Congress, specifically Louise Slaughter (R. NY) who spearheaded what 13 years later became GINA, the Genetic Information Non Discrimination Act, 2008.
I was hooked. The Human Genome Project had just begun and opportunity abounded. I could fulfill my desire to create a niche area at the intersection of genomics innovation, clinical adoption, and ELSI issues. In 1994, I established a boutique consultancy, originally named Genetics, Ethics & Policy, later changed to Helix Health Advisors. Being a consultant allowed me to freely choose projects and collaborators, optimize my interest in working on different types of projects simultaneously and be creative in my approach to solving client problems.
I began by consulting to national and international NGOs, promulgating recommendations to protect human rights in the advent of global genetic research to UNESCO, the International Bar Association, The American Association for the Advancement of Science and was invited to write articles and deliver talks to major industry conferences.
From, there I delved into helping grantees and entrepreneurs design effective genetics education for providers, patients, and consumers. I was Principal Investigator on an innovative SPRANS (Special Projects of Regional & National Significance) MCHB (Maternal & Child Health Bureau, HHS (US Department of Health & Human Services), research grant which identified cognitive and normative barriers to integrating new genetic knowledge into clinical decision making.
On the basis of these findings, I designed an innovative approach to educating physicians that used predicted errors in clinical diagnostic decision making to get physicians to make those mistakes and use this experience as teachable moments to better understand why their clinical heuristics led them astray as well to learn how to improve their reasoning skills by seeing what clinical problem-solving experts did. I presented my research at a plenary session at the American Society for Human Genetics and it was quite provocative.
From there I moved to personalized medicine, now often referred to as precision medicine, including pharmacogenetics/pharmacogenomics and the nascent field of nutrigenomics. I recently served as Editor-in-Chief of Applied & Translational Genomics, an open access online Elsevier journal, where I worked hard to create equitable opportunities for researchers in developing countries to publish, even when they could not afford the publication fees.
I have published over 40 peer-reviewed articles, authored Just Genes: The Ethics of Genetic Technologies and served on various boards, including but not limited to industry conference planning committees. The delightful aspect of running a small boutique niche consultancy is that I have had the pleasure of working with outstanding experts from the around the world.
We’re always bombarded by how great it is to pursue your passion, etc – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
The road began smoothly because genetic discrimination in the mid-90’s was a hot topic. The Americans with Disabilities Act had just become law and advocates were eager to pass legislation to prohibit discrimination based on one’s genotype. The market crash following the dot.com boom created struggles because company budgets were tight and investment in innovation took a very cautious turn. When the economy picked up so did consulting opportunities.
I have been fortunate to not need to do much marketing. However, more marketing is always helpful for increasing awareness and solidifying your brand.
So, as you know, we’re impressed with Helix Health Advisors – tell our readers more, for example what you’re most proud of as a company and what sets you apart from others.
As Founder & Managing Partner of Helix Health Advisors, I help clients integrate transformative and convergent technologies at point of care delivery, form strategic partnerships, improve provider-patient-consumer engagement and better understand competitive landscapes. I continue to work on a broad array of challenges to clinical adoption of genomics innovations, including how best to communicate scientific and translational advances as well as help companies prepare the market and strategize about how best to introduce new diagnostics.
My primary client base is:
Clinical diagnostics companies
Knowledge management/decision support tool companies
My Specialty areas are:
– Personalized Medicine: pharmacogenomics, pharmacogenetics and companion diagnostics,
– Consumer Genomics
– Integrating transformative technologies, including decision support tools at point of care
– Program/alliance management
– Liaison between physicians, scientists, and patients
– Provider-patient-consumer engagement
– Genomics education and tactical communications
– Bioethics: strategic consultations, consent, privacy, data management
– Market research/competitive intelligence
I am most proud of our pioneering work into barriers and drivers to integrating new genetic/genomics knowledge into daily clinical decision making, my impactful talks on patient engagement, ethics issues and data ownership at major industry conferences, as well as my work at E-i-C at Applied & Translational Genomics, online open access Elsevier journal. Finally, I am grateful to have been recognized over the years by top thought leaders, most recently by Dr. Eric Topol who quoted my collaborator Dr. Nimita Limaye and I on the duty to share data, in his most recent book, The Patient Will See You Now,
What sets us apart is both the breadth and depth of knowledge, but also our international connections We are able to help clients not only solve their problems but help them see the impact those solutions, anticipate market challenges and offer strategic solutions to meet those challenges head-on and ultimately help patients and consumers in need.
So, what’s next? Any big plans?
I am increasingly drawn to working on ‘omics’ solutions to complex, and as yet not well-characterized diseases, as well as using data mining to accelerate discovery, diagnostic development and eventually therapy. I am also focused on the problem of how to ensure that quality research conducted by researchers in the developing world makes its way to stage of worldwide access.
- Address: 317 Lamartine Street, Suite 200
- Website: https://www.linkedin.com/in/carolisaacsonbarash/
- Phone: 617-78409403
- Email: firstname.lastname@example.org
- Twitter: @cisaacsonbarash
- Facebook: https://www.facebook.com/HelixHealthAdvisors/
- Google+: https://plus.google.com/110094003502358177803
Always ready to dive right in!
My book cover- Just Genes: The Ethics of Genetic Technologies
Eric Topol: The patient will see you now- my quote at the bottom
EHP Pharmacogenomics- my quote