Experiences in Public Health Genetics

“I fell in love with public health genomics as an undergraduate at Princeton, where I was fascinated by the clinical, ethical, and social implications of molecular biology. My professional role model was Antonia Novello, M.D., M.P.H, the first female U.S. Surgeon General. After obtaining an M.D. at Icahn School of Medicine at Mount Sinai, I attained an M.P.H. at Columbia University while completing residency in preventive medicine at University Hospital, Stony Brook. After an NIH fellowship in medical genetics at UCLA, I began teaching public health genomics at USC, Keck School of Medicine and the University of Massachusetts, Amherst (one of the first online MPH programs). Presenting my novel course at an APHA conference in Washington, D.C., I was “discovered” by Jossey-Bass/Wiley publishing and invited to write my textbook, “Public Health Genomics: The Essentials,” now an internationally renowned resource. I have enjoyed teaching countless pre-medical students, public health professionals, and geneticists at UCLA Extension and Stanford School of Continuing Studies. In my medical practice, I have been honored to provide comprehensive preconceptional genetic screening and counseling to high risk couples, helping them achieve healthier outcomes for their families.”

-Claudia Mikail, MD, MPH

https://www.facebook.com/doctormikail/

“I learned of Public Health Genetics (PHG) through my state’s newborn screening program.
I’ve been involved in the expansion of the recommended screening panel to bring testing and education to more families.  More people could understand the disorder my children have and look for answers for their own. I became an advocate for the regional genetics networks because of the support I received and hoped to help other families get the best outcomes possible.  I hope to help them understand that they are not alone.

We parents plan on a healthy baby.  We do not see that our child could have a disorder. Until it happens.  Then we go looking for answers after the panic subsides and we start to think.  We check with our doctors, the family, the internet, any source for information that can give us hope. PHG can give that in a science base.  It can give us hope that something can be done.  If not now, then in the future.  We find out that there are dedicated people working in PHG on a better future for our children through applying genetic and genomic science.

Every parent has a story.  We just need to share them.”

“For me and families I have met over the years, the subject of genetics in general is confusing.  Most of us don’t think of “publichealth” when we think of our own kids as we go through a diagnostic odyssey.  I have appreciated that the Regional Genetics Networks have taken such a pro-active approach to informing families (and providers) about what genetics services might mean to them.  I especially appreciate the efforts of the RGNs to take complex material and make it easier for us to understand and use.”

How did you learn about public health genetics?  I think the first time I really absorbed the meaning of ‘public health genetics’ was at a national genetics conference session exploring ethical dilemmas with genome editing to stop future instances of some disabilities, like Rhett Syndrome.

How has public health genetics impacted your/your child’s life? While I think it is important to better understand the genomics of disabilities, I fear that society at large views disabilities as negative and something to be corrected rather than a natural condition of the human body. My daughter is who she is – biologically, socially and environmentally constructed – and should be viewed, in addition to her genetic makeup, in terms of her gifts and talents.

Why is public health genetics important?  Knowing my family medical history empowers me and my family to stay healthy.  The same applies to society – constantly monitoring the biology of all citizens gives us the power to cure diseases (not disabilities) at the community, continent and world levels.

How would you describe public health genetics to a family or individual who was unfamiliar?  To me, public health genetics translates to how advances in human genetics can be used to prevent disease and improve the health of the population.

What does the term ‘public health genetics’ mean to you and your family? One example of what public health genetics means to me is the story of Alzheimer Disease’s impact on my family; one of the most expensive diseases in America.  Public health genetics will improve at a society level the understanding of the disease, earlier diagnosis and successful therapies.

Before your experience with the Regional Genetics Networks, did you know of the term public health genetics or the field? If you did know about it, how did your understanding of the field change after your personal experience?   Before participating in (my regional genetics network), I only thought of genetics at the individual level – how it impacted my child and my family.  I viewed the field from the perspective of genes coming from family lines and communities sharing similar genetics.  But, with the growing mobility of people today creating changing hues of communities and genetic drift, I value the need to continue to have breakthroughs in medicine that improve our understanding of diseases balanced with the ethical dilemmas of not creating ‘perfect’ human bodies.”

“Last May, my genetic counselor broke the news to me that I carry the BRCA1 gene mutation, which greatly increases my risk of developing breast and ovarian cancers. The news was hard to take, but ultimately has brought me relief and understanding. I’m now focused on helping myself, family members, and the greater community understand the importance of genetics and health. It’s true what they say – knowledge is power!

Because of my positive experience with genetic counseling, I am now working with the non-profit that helped me discover my gene mutation, the Genetic Support Foundation (GSF). In my role as communications and outreach coordinator, I help spread the word about the value of genetic counseling, family communication, and patient advocacy. This work is very rewarding as I can help others who may be experiencing a similar journey with inherited cancer syndromes, as well as help the public have more awareness around genetics and health in general.

Two exciting projects I’m a part of as a team member at GSF are in the realm of support and education. One is an online and in-person support group for those with hereditary cancer risk. The other is in partnership with the Washington State Department of Health in launching a new public service project allowing cascade screening for hereditary cancer patients. If my small part in these projects can help families cope with the information, enables patients and providers to share life-saving information with family members, and empowers people to take action and make informed decisions around hereditary cancer risk, then I can take great satisfaction in knowing I’m helping make a difference. Prevention and treatment options can be hugely influenced by knowing whether you carry inherited cancer syndrome! My two sons are too young to be tested for BRCA1, so I do not know if their 50/50 chance of inheriting the mutation will fall on the side of positive, but as they see me do this work, I do know that I’m passing on values of public service, personal advocacy, and informed decision-making. My grandmother, who passed away from ovarian cancer before I was born, would be proud.”

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