Tag Archives: Medical History

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.