Tag Archives: Genetics

Adoptee rights is also a moral issue to ensure equal rights to good health, yet public health and health professionals ignore this intentionally

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.

Adoptee rights and family medical history: this is obvious and let’s talk about it

We still don’t know to this day how many adoptees there are in the United States. That also means we don’t know how many of them are now at elevated risk of genetically-based medical conditions. But we do know that knowing one’s family medical history is a best medical practice. This is not rocket science here.

As an adoptee, I still am baffled why so few of my fellow adoptees speak the language of medical harm that is foundational to this system. Even adoptee rights activists I know who are really smart either don’t get this or refuse to talk about this.

I always have talked about it and I will continue to raise this issue, as I did in my book on how adoption also is a public health issue that causes harm. In chapter 8 of my book, You Don’t Know How Lucky You Are, I outlined the extensive research documenting the critical importance of knowing one’s family medical history: “Having access to family health history and information on other relatives—relatives who are genetically related—is considered by the nation’s foremost health experts to be necessary and beneficial for individual and population health. But as of 2018, there is no national campaign or policy initiative to promote giving hundreds of thousands of adoptees the ability to learn about their family medical health history.”

In my case, I’ve known my bio-family since 1989. This week I just learned that my family has a medical condition with genetic risk factors that mean I likely will be at risk. The right to know one’s family medical history is a basic human right that is denied to most adoptees by law. This must end. And if adoptees can’t even talk about it, shame on all of us.

My holiday card tradition on Thanksgiving day

Habits can be extremely rewarding.

One of mine is to write my holiday cards on Thanksgiving day. I have kept this tradition for more years than I can recall. No matter where I have lived or what happened on that day, I always found time to think about those in my life, including family and friends.

The act of writing and remembering reminds me of the bonds of connection I have with people far-flung across this country. Some of these connections help sustain me, good times and bad. Some have little impact in my life.

I went with an Oregon-themed card this year. In past years I have made my own. On each of the cards I create a personal message, written by hand and signed. A regular theme, if I can find one, is to share a positive wish of good fortune for the coming year. It is always preferable to be positive, even when we know some persons may be experiencing hard times, like some of my relations and friendships.

In my case, my card writing involves my circle of friends who seem to remain a part of my life as I age. They can be called my “chosen circle.” They are not family, for me at least. They matter a great deal in my life.

My “family card list” includes my step-family, my adoptive family, and my biological family. Because I am adoptee, and because that status is fraught with complexities about the meaning of “family,” my holiday card tradition has challenged me.

Having had a step-family since I was 18 years old, I can vouch first-hand that these relations are not easy. Step-family bonds are not blood-based or kinship-based.

Everyone in those dynamics knows the minefields, and to deny these tensions is to deny the critical role of genetic kinship in how all species, including humans, care for and help their close genetic relations succeed. This is equally if not truer of adoptive-family relationships.

I explore this in my greater detail in my adoptee memoir and critical exploration of the U.S. adoption system, in my chapter appropriately titled “Blood is thicker than water.”

Author and adoptee Rudy Owens gets ready to mail his 2022 holiday cards to his biological, step-, and adoptive family and friends on Thanksgiving day 2022.

In my book, You Don’t Know How Lucky You Are, I write about the meaning of relationships with non-biologically related step-family and other distal adoptive kin: “There simply is no bond that joins us, much the way I feel about my adoptive cousins, uncles, and aunts. For me, there is no blood that ties us, nor DNA to bind us. We are not true kin, both as I perceive it and as I have experienced this relation for decades now.”

Yet each year, on Thanksgiving I will still write letters of fellowship for the coming Christmas, or winter holidays if you prefer to call it that.

There is very little power I have to create relations where none are hardwired to exist by the determinant laws of biology and genetics. What I do control is my ability to offer a hopeful gesture. Whether that gesture is accepted or rejected, like so much in our lives, is not in our power to manage.

Because I was separated as a newborn baby from my biological family by laws and systems that erased my past and discriminated against me and millions of others by status of birth, I only began my biological family relations in my mid-20s. I explain all of this in my book for any reader seeking to understand what that means for me and other adoptees.

As someone who is now in my mid-50s and getting older, I remain clear-eyed how those relations will remain forever impacted by this system of separating families. And with my surviving biological family members who I do have contact with, again, I am not able to control how they respond. It has never been simple or easy to explain to anyone who is not adopted and separated from their biological family relations.

So with Thanksgiving now behind us, and my holiday cards on their way to my blended, adoptive, and biological family, I will celebrate what some may call our betters selves, to be the person I prefer to be.

Yes, adoption as a system forever made my holidays a mixed up time, but I have, for decades now, not let this define the meaning I give this time of year freely.