Rudy Owens, the author, is shown in a shot from September 2023 during a run in Finland’s Koli National Park. Despite a life of pursuing healthy activities like running, genetic health risk factors also play a key role in my health and life expectancy.
Just before the new year started, a biological relative on the maternal side of my family died. It was both sudden but maybe not a surprise.
My relative’s passing felt painfully tragic for those closest to my biological family member, despite my relative’s age.
The cause of death was cardiovascular disease. The disease is pervasive among my Finnish-American relatives and among my Finnish relatives I recently found in Finland. Ethnically, I am a quarter Finnish, and also Welsh, English and some other ethnicities I cannot fully confirm simply because I was born as an unwanted child whose father until his death refused to accept his paternity or provable genetic relationship to me.
Unlike many adult adoptees in the United States, who number in the millions, I at least have a very solid understanding of half of my heritage, on my birth mother’s side, including now my family health and family medical history.
My four biological grandparents all play a role in my health, passing down genetic traits and also risk factors that could impact my lifelong health.
According to the almost uniform consensus of the public health and medical fields, knowledge of family health history is one of the most important ways all persons can pursue and achieve good health.
The U.S. national public health service, the Centers for Disease Control and Prevention (CDC), tells Americans they need to be proactive in finding their family health history to achieve better health.
“Most people have a family health history of at least one chronic disease, such as cancer, heart disease, and diabetes,” the CDC says in its public guidance on genomics and precision health. “If you have a close family member with a chronic disease, you may be more likely to develop that disease yourself, especially if more than one close relative has (or had) the disease or a family member got the disease at a younger age than usual.”
Such advice, from the public health and medical experts, is science based, and is meant to help save lives.
Yet no medical health group or public health groups, including the CDC or professional groups like the American Heart Association or the American Diabetes Association—each focused on illnesses with well-documented genetic risk factors—has ever taken any action to promote the ending of legal discrimination in state adoption laws that deny family medical history to literally millions of U.S.-born adoptees.
I talked about the glaring hypocrisy of such health guidance in my memoir and public health examination of the U.S. adoption system. In my book, I address past and continuing failures of the medical and public health fields. Silence from these professions translates to harm for millions of adoptees, only because they are denied basic human and legal rights granted to others, and by consequence their family medical history by the force of law.
I published this in my book in 2018, and since that time, there is still no national campaign or policy initiative by medical and public health professionals and groups to support adoptees seeking, by law, legal access to their vital records.
These groups and experts have never cared, based on facts showing no documented efforts to support adoptees, even in public relations messaging. There is no public evidence visible anywhere they will reverse course and advocate to change laws helping adoptees. Their failure is palpable.
Collectively, this represents a complete moral and collective professional failure of these systems to improve the health of individuals and population health. Because those harmed are adoptees, this failure remains an acceptable form of collateral damage to ensure the U.S. adoption system remains a broadly accepted and beloved institution, that continues to be supported by the medical and public health professionals at all levels.
My risks as a someone one-quarter Finnish
When I learned about the death of my biological family member just before the start of 2024, it also did not surprise me.
I had found my biological kin in 1989. Since that time and as I got older, I was able to figure out some genetic health risks that were hidden from me as an adoptee by Michigan state law that remains on the books to this day. As someone trained in public health (I have an MPH from the University of Washington School of Public Health), I was more proactive in this self-research than most adoptees I have met.
Researchers have identified 39 genetic disease within the Finnish population, many fatal. Knowing one’s family medical history, such as these risk factors, is a right for everyone, including all adoptees.
As a group, many adoptees are tragically uninformed and unaware of the risks they face. Groups who advocate for adoptee rights by and large are silent on family medical health history considerations in their advocacy for reasons that baffle me to this day.
Finnish medical researchers have long identified genetic health risks for the Finnish population from inheritable conditions, including heart disease.
In the case of the Finnish people, centuries of isolation created genetic and health characteristics that today’s genetic health researchers are able to identify. Researchers have identified 39 such genetic diseases. Many are fatal. One genetics researcher, Dr. Leena Peltonen, notes: “Genetic diseases transform the family. You know the children won’t get better.”
Some of the health risks for Finns include congenital nephrosis and heart disease. In fact, Finland has highest rate of mortality from heart attacks in the Western world.
And with the passing of my relative and newly found knowledge of heart issues with my Finnish relatives that I only meet last September, I am now more mindful of what could strike me in the future too.
Luckily, I have been mostly vegetarian since I was 18 and have made a lifelong commitment to exercise, healthy dietary habits, and self-care. What I can’t do is change my genetics. In my case, I still only know half my family health history, on my maternal side, from my biological mother’s family.
I still know little about my paternal father’s families, either his mother or father. That story is explained in my book on why I have been denied this information as a matter of Michigan state law. As someone born as a bastard and as a product of the U.S. adoption system that denied me my birth identify, birth records, and family ancestry, I have no choice but to accept this reality. I accept it by advocating to change this upstream, working to change laws that deny family medical history to people only because of their birth status as adoptees.
After the death of my family member, I spoke to a bio-relative, who told me he will now speak about risks they face from heart disease. I also spoke a friend who is a doctor. He knows my status as an adoptee who found his family and is familiar as a doctor in Denmark with genetic risk factors. I appreciated his cheerful message to me, “I wouldn’t worry too much about heart disease, if I were you. We all have that coming if we live long enough. You live a healthy life. And more importantly you know how to make the most of it.”
Family medical history and current legislative discussions to restore adoptees’ rights
As I look ahead, I feel mostly good about my health. I treasure it.
However, I feel very little confidence that there will be any sea change among medical or public health groups and professionals to suddenly emerge as allies in legislative efforts to restore legal rights to adoptees to access their original birth certificates and vital records that may be accessible, as a matter of law. There seems to be willing professional indifference in the United States to a core idea articulated by the World Health Organization that the right to health is a basic human right, requiring legal measures to ensure that right.
Not one medical or public health group provided supportive statements during legislative discussions in the Michigan House of Representatives in November 2023 where two bills were adopted to restore such rights to Michigan-born adoptees, like me and tens of thousands of others. That is no different than other legislative debates that past five years where bills have been debated and reforms have been passed.
It is beyond my power to get this group of professionals to have a change of thinking, and right now, I have mostly stopped working towards this as an advocacy goal.
What I will still continue to do is remind my fellow adoptees about some proven wisdom: remember who your friends are and who they aren’t.
Never forget this.
As for those who professionally are obligated to promote health for everyone, your silence equates to indifference. You will own this so long as you stay silent.