I have never wondered about my parentage. Every time I see a photo of myself I am reminded of the fact that I am the "spitting image" of my dad, what he would look like in female form, basically. According to 23andMe my mother and I are connected by 49.84% of our DNA.
When you get the testing done by Ancestry or 23andMe it includes a list of people who share your DNA. Increasingly, more and more people get tested, and many of them learn their parent who raised them had no biological connection to them. As you can imagine, that type of information shatters one's identity.
My friend Rob grew up and lived most of his life secure in the knowledge that he was his father's son. They shared the same name - Rob is a "Jr." However, when Rob did the DNA testing through Ancestry half of his relatives -- the ones on his father's side -- were missing. He wrote about that very upsetting event here. Rob was Donor Conceived.
Many people (millions) are learning, through Ancestry and 23andMe testing, that they are part of the DC (Donor Conceived) community, and the NPE (Non Parent Expected) community.
According to a survey done by the Pew Research Center in 2019: "About one-in-seven U.S. adults (15%) say they have ever used a mail-in DNA testing service from a company such as AncestryDNA or 23andMe, according to a new Pew Research Center survey... Roughly a quarter (27%) of those who say they have used mail-in DNA testing say they learned about close relatives they didn’t know about previously."
So how many people are now going through the painful process of finding out they have a previously unknown parent, like my friend Rob? Today, there are 341,567,135 people in the USA. If 15% have had the genetic testing done (that was the percentage in 2019) that's 51 million people. About 5% of those people will find out they are part of the NPE community.
That has led to a lot of people finding out that half of their medical history is missing. Millions of people are out there wondering about their parentage and their medical histories. My friend Rob was lucky, because one of his half siblings passed along the medical history of his biological father. Oftentimes, people who owe their existence to artificial insemination are not so lucky.
I was inspired to write this blog when I read this article this other day: AncestryDNA, 23andMe introduce you to new relatives. Now the nightmare: They won't offer medical history.
I am the parent of two adopted children, adopted from overseas, and my children have no idea about their medical history. They don't even know the names of their biological fathers. So we don't know if they have the genetic markers for cancer, Huntington's Disease, Parkinsons, or any other disease or medical condition.
Knowing your medical history is very important. The right to know one's medical history can mean the difference between life and death.There are diseases which, if detected early, can be cured or at least managed. But if you don't know your history you don't even know if you have the genetic markers, and should be tested for them.
I have been a litigation paralegal since 1985 and I have seen a lot of frivolous litigation but there is one case I would love to see go to the Supreme Court. Imagine a man who finds out his father was a guy his mother had a brief affair with, and he wants to know the medical history of his biological father. He gets the genetic testing done and finds out the identity of the man. He asks the bio dad for a medical history. The bio dad, who is ashamed of his son born out of wedlock, refuses to hand over any medical history information. The son sues him. Bio dad continues to refuse to disclose anything. The case could make its way through lower courts and wind up making new law in the Supreme Court.
"A medical history is important, and no reasonable person will deny that. It can save someone's life," according to my friend Jack, a retired lawyer. I regret that Jack is long retired and can't take on a case. He gave me some valuable insights in a phone call recently.
One aspect of this is whether or not the right of privacy would outweigh the right to know. That would be important for the court to consider.
If you aren't familiar with how lawsuits work, here's the 411. It usually takes years to get a case through lower courts, to the level where it's going to be heard in the United States Supreme Court. When you take a case to the Supreme Court they decide whether or not to grant cert (hear the case) based on a number of factors. At the circuit court level there has to be disagreement about the law, for example.
I feel strongly that every person has the right to know who their biological parents are, and their medical history.
I would love to see an attorney take on this kind of case in real life, working for a real client, and take the case to the Supreme Court. I want the United States Supreme Court to make new law that says YES, we ALL have a right to know our medical history. That ruling would change lives. It would likely save lives. It would not be about money. It would be about JUSTICE.
Call me old-fashioned or naive. I don't care. I will always think justice is important.
#DNAtestingoutcomes, #medicalhistoryforthenpecommunity, #testcaseonmedicalhistory
