May is Asian Pacific American Heritage Month. The month celebrates Asians and Pacific Islanders in the United States. A rather broad term, Asian/Pacific encompasses all of the Asian continent and the Pacific islands.
According to the NSGC’s 2021 Professional Status Survey, almost 9% of survey participants identified as Asian American or Pacific Islander (AAPI). These individuals have made priceless contributions to our profession from its inception. This blog series is dedicated to our AAPI colleagues who empower me every day and instill hope in me that the promise of the genome will reach all Americans. I want to especially acknowledge genetic counselors Nadine Channaoui, Caiqian Copper, Sylvia Mann, Vivian Ota Wang and Vivian Pan who have shared the tumultuous journey to equity and justice with me over the years.
This blog series is a tribute to my dear friend and mentor, Dr. Jane Lin-Fu, an ethnic Chinese woman, who pioneered health equity in genetic care.
This is part 2 of a 3 part series, to view part 1, please click here.
It’s been 20 years since I last saw her but Dr. Jane S Lin-Fu, or as I grew to know her over the years, simply Jane, has not changed much. I notice the same delicate features, stunning silver hair and her gentle smile. Except now, Jane can’t clearly see me anymore because she lost her eyesight, her voice is softer, and she tires easily. She sits with her husband of 63 years, Mark, and we are joined by her daughter Stephenie. Jane is struggling to remember specific dates and as she does, Mark and Stephenie gently chime in. But despite Jane’s frailty - her devotion to equity, her feisty, rebuttal of injustice and her clear conviction of standing one’s ground on what is right all come shining through.
I ask her about her background. Jane and her entire family are ethnic Chinese. She was born in Singapore, moved with her family to Shanghai, and then to the Philippines where she went on to attend medical school. She made her voyage to the United States alone to start her internship and pediatric residency at the Brooklyn Jewish Hospital and Medical Center. While in New York, she met her husband, Mark. The couple went on to have three children and six grandchildren. From New York, the couple moved to the Washington D.C. area as Mark, an electrical engineer, got a new job. Jane’s Government career started with the then Department of Health, Education and Welfare (HEW), now known as the Department of Health and Human Services – specifically within the Health Resources and Services Administration (HRSA), a mammoth federal agency that provides leadership and financial support to health care providers in every state and U.S. territory.
As a young doctor practicing pediatric care in Brooklyn, Jane noticed the harmful effects of lead on children from low-income neighborhoods. She couldn’t understand why there was such little attention paid to this problem.
“We missed a case when I was training at a Brooklyn Jewish Hospital. There was a child that came in vomiting. The children mainly came from low-income neighborhoods. One of the attending doctors said ‘oh, we have lead poisoning all over the place.’ Everybody knew there was a lot of lead poisoning, nobody seemed to really care. But that bothered me, and we missed the case. I said, ‘how come we’re missing all these cases, how many more are there? Nobody knows about this, nobody cares.’ I don’t understand things like that. When I started my job at HEW, I told my boss that I really liked to write. I was able to then write and that became quite widely circulated in the United States. The Government Publishing Office published and disseminated these papers. So, everybody read about lead poisoning in children, and that became an issue. Then once you publish it in the New England Journal of Medicine everyone notices it.”
Jane published numerous papers in the peer-reviewed literature, among those several in prestigious journals such as the New England Journal of Medicine [1-13]. She also wrote seminal government white papers on rubella, sickle cell disease and lead poisoning, which were widely distributed. Jane’s work led to an understanding that lead infestation was not a housing issue, but a public health crisis. Norms for lead levels safety and monitoring were set and scores of public health research initiatives, which Jane’s efforts spearheaded, informed state and federal policy. Currently, Federal regulations ban the use of lead in paint, gasoline and plumbing.
In the late 1980’s Jane was asked to head the Genetic Disease Branch within the Maternal and Child Health Bureau (MCHB). She said she wasn’t sure why she was chosen for the role, and knew little about genetics. Nevertheless, she was determined to make the most of it and bought books about human genetics. Little did she know that it wouild be under her watch that the largest undertaking in health research would take place changing medicine as we know it.
Jane struggled with a minimal budget to build her agency’s infrastructure, which would absorb and accommodate the findings of the human genome project. Jane did that making sure that all communities stood to benefit equally from this promising undertaking.
Within genetic care, Jane introduced special grants within SPRANS to eliminate cultural, ethnic and linguistic barriers to genetic care, creating scores of best and promising service models in genetic care. These projects were set all over the country within underserved communities, and used creative community-based mechanisms to overcome linguistic, educational, financial, cultural and geographical barriers to genetic services. To take a look at the many genetic projects funded through SPRANS, I invite you to read the special issue of Community Genetics: The National Dialogue on Genetics released in March of 1999.
Working part-time from the beginning of her government career, Jane was a pathfinder in recognizing the harms of lead poisoning, a preventable environmental hazard adversely impacting poor children. It was Jane’s advocacy and writing that put this devastating health hazard on the national agenda as a leading public health crisis. Moreover, years ahead of the Institute of Medicine’s report “Unequal Treatment” Jane recognized the challenges in providing equitable health care for marginalized and underserved communities, and pointed the national spotlight on linguistically and culturally appropriate care. Jane also published a series of articles on the special healthcare needs of Asian and Pacific Islander communities and was instrumental in the establishment of the Asian and Pacific Islander American Health Forum (APIAHF), the oldest and largest health advocacy organization working with Asian Americans and Native Hawaiian and Pacific Islander communities.
Among the many awards that Jane received over her career, one she is most proud of is the Superior Service Award in the Administration of the National Genetic Services Program and for outstanding performance in focusing the national spotlight on the danger of lead poisoning, which she received in 1990. This award is the U.S. Public Health Service’s highest honor of a civilian. In 1993, the U.S. Public Health Service gave Jane a Special Recognition Award for bringing about action to overcome ethnocultural barriers in health services for ethnic and racial minorities.
My final blog includes quotes from my two interviews qith Jane. Her story, from a little girl in Shanghai to the largest agency of the U.S. government can only be told by her.