Tag Archives: Family Medical History

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.

Sharing my story with the public and learning how adoption impacts their lives

Rudy Owens holds a copy of his memoir on the U.S. adoption experience.

I gave my first book reading on my recently released memoir on the U.S. adoption experience and the larger issue of adoptee rights last night (Sept. 25), at the Tigard Public Library. There was a good turnout, and the audience was fully engaged in the topic and the information I shared. My talk covers many of the larger themes in my memoir and study of the American adoption system.

One of the attendees was a respected state lawmaker who I admire, and I appreciate that she took time from a busy schedule to learn more. I had some friends attend as well, which is always welcome. At events like these, you never know who you may meet or why they care about this issue.

After the presentation, one attendee told me a story about a now-deceased loved one who was adopted and who was unable to get their family and medical history. This was critical information because the adoptee had a genetically transmittable illness. That illness was also passed to that person’s kids, who then had to use other means to try and find their family past when they became adults.

This is a very common story, and I have heard variations of this story from many adoptees and loved ones of adoptees, who describe the frustration of having potentially critical medical information withheld from the one they love just because they are adopted.

Harm occurs to adoptees’ families as well as adoptees

This is one of many travesties of our adoption system and the discriminatory state laws that have potentially life-saving information withheld from adoptees and, equally, their loved ones who may be related as offspring. Tens of millions of American likely have medical conditions with genetic origins. The National Institutes for Health reports there are more than 6,000 genetic and rare diseases. These afflict more than 25 million Americans, and about 30 percent of early deaths can be linked to genetic causes.

Book reading at the Tigard Library, Sept. 25, 2018

Many in this country overlook that spouses of adult adoptees and children of adult adoptees are also impacted by the laws that deny basic rights and medical and family history to millions.

This simply must end, and it is a scandal of our public health system and medical system that no major medical group is an ally of adoptee rights groups or is advocating with adoptee rights advocates to restore rights to records for adoptees. I highlight this decades-long failure of our medical, public health, and political system in my book in Chapter Eight. You can order the book online to learn more.

I look forward to many more readings and more conversations with people who care about the much larger story that impacts countless families in the United States, Canada, and other countries that promoted adoption and still don’t give adoptees rights to their past or even their own family medical history.

Health professionals have professional responsibility to help adoptees change state laws

Yesterday, I visited a medical specialist for a routine visit. Like every office of doctors and dental professionals I have seen for well over three decades, this office asked for background about my medical history. Such information can be helpful as shown by nearly all peer-reviewed science to offer information to help patients receive appropriate and responsible health care.

For the majority of American adoptees, however, this simple process can be insulting and demeaning. It is another reminder how laws in most states deny potentially life-saving information to them because they are adopted. No other group in the United States is denied this critical health information based on status of birth alone. I devote a chapter to practice and problem in my forthcoming book, You Don’t Know How Lucky You Are (Chapter 8: Who Am I?).

The National Institutes of Health highlights why every person needs to know their family history–it can be a matter of life and death with cancer.

Health professionals more than any other group are aware of the role genetics and family history play in determining a patient’s likelihood for disease, health problems, and risks from illness. I wrote at length about his in my post from March 20, 2016, when I was advocating to get my original birth certificate from the State of Michigan (I won that battle three months later). I noted, “Adoptees like all other Americans should by legal right be entitled to this potentially life-saving information. The National Institutes for Health reports there are more than 6,000 genetic and rare diseases. These afflict more than 25 million Americans, and about 30 percent of early deaths can be linked to genetic causes.”

Yet there is almost no support from anyone in all of the health professions or groups like the Centers for Disease Control and Prevention with the rare exception of the American Academy of Pediatrics, which has taken a public stand advocating for this at the national policy level as a matter of science and public health. (Note, this group also was among many health experts who advocated in 1960 for adoption as a social-engineering policy decision that relinquished hundreds of thousands of infants–a little-known and controversial position I explore at length in my forthcoming book [Chapter 2: The Most Suitable Plan]).

To my surprise, the office I visited did ask if I was adopted or if I did not have access to my family medical history. I was astounded. This was the first time I have ever seen any health facility acknowledge adoptees and that adoptees may not legally have access to their family health history as a matter of legal discrimination denying them their original birth records.

When I completed my intake forms, I noted this fact and specifically wrote on the form saying it was the first time any health provider acknowledged the existence and reality of an American adoptee. When I completed my exam, I thanked my doctor for this evidence-based protocol and told her it acknowledged millions of Americans may not have their medical history at no fault of their own. She told me her practice absolutely needed to know a patient’s background because many of the health problems they address have genetic precursors.

I also told her that my forthcoming book would be examining this topic at length. She was excited to hear about this and told me she would like to see the book. That conversation also told me many doctors may also like to know about the issue linking health, public health, and adoption and that my book can reach a large audience of readers who could become advocates for legal reform to change discriminatory state laws.

My immediate proposals to address this are two-fold. For anyone who is an adoptee, I encourage them to tell all of their health providers to change their intake forms to acknowledge health history is a legal issue that adoptees cannot change alone, and that medical professionals have moral and professional responsibilities to issue statements supporting birth record access for all adoptees, without exception. For medical professionals, I encourage you to become familiar with state laws that seal adoptees’ records and explain to the public how this undermines public and human health. This is within your range of practice to encourage healthy lives for everyone. Public health practitioners also need to be part of this, including the CDC.