Privacy… Yeah About That. Can You Trust Your Genealogist?

Where do you draw the line between the past & the present? What information do you feel entitled to about your living relatives? What of your information are they entitled to? Sometimes a life depends on this exchange of information, right? I don’t know if I have the answers but let’s find out if I can get close & make it a little easier on us to collaborate, whether or not we were adopted or otherwise separated from our bio’s. It’s gonna come down to some information I pulled from a medical journal (I read those a lot, actually) & I will work it into this post somewhere. This post is challenging because the audience is both the genie & the descendant. 


descendancy research
Descendancy Research is becoming more popular & practical due to connections made through DNA testing.

I. My genealogy research has become equal parts a search for family history AND family present/future.

This formula happened by accident, really. I didn’t start out as a genie with intent to meet any LIVE people. At some point in doing my research, I realized I needed the help of the living & future generations to tell me the story of those past IF I wanted to tell the stories with the best accuracy. And we all want that, right? But, be careful! We’re conditioned with a feeling of entitlement when it comes to medical information in regards to the dead. The living require a different approach!

By the time a genealogist approaches a living relative, she already knows a great deal more than they may be comfortable with.

Let’s just get that out of the way now. If a genie finds you, & he/she doesn’t already know when & where you were born, your mother’s maiden name plus the last 5 places you lived & what you’ve inherited, she will know it (& more) the moment she decides she needs to. Better hope trust can be established & maintained. That said, the personality traits that have to line up for a person to even be interested in, have time for & be able to afford to do genealogy are typically pretty stable. You don’t often hear of a genealogist wreaking havoc in society. Gossiping within our own realms, yes, but we’re not menaces to society.

II. A genealogist should carefully consider whether information he/she receives is of such nature that she is entitled to it vs. such that she has been privileged to have.

Not all of the information you get from your living relatives needs to be shouted from the rooftops and blogged. I’ve seen some modern day genealogy blogs that have really stripped the dignity away from their ancestors & accidentally left the living descendants totally exposed to conjecture. In the genealogists defense, for centuries we’ve been spoiled by having no repercussions because our relatives are dead & sharing exciting info is what it’s all been about, but now, we’re working with the living. The game is changing. Without going into the psychology of parts of brains, I will just point out that a different part of our actual brains must take over when we shift from the dead to alive. If you’re the genealogist, you need to make sure your relatives can trust you, and if you’re on the other end, you need to make sure you feel good about the trust between you and your genealogist. Not every genealogist is cut out for working with living people. I actually had to have a talk with myself about this… can I be trusted to know what to tell/record & when to tell/record it? Insert GENOMICS. Here’s an excerpt from the journal that borders on being too long:

The fields of genetics and genomics have seen enormous growth in recent years. (Genetics is the study of single genes and their effects, and genomics is the study of all of the genetic material of a species—the genome—and the relations among different genomes; because some diseases or conditions are caused by interactions among more than one gene or among genes and the environment, some scientists consider the study of such cases to be part of the field of genomics.1) As a result, the disclosure within families of the results of genetic testing and other information on hereditary risk has emerged as an important area of research. Many studies focus on genetic conditions such as Huntington’s disease,2, 3 cystic fibrosis,46 hemophilia A,7 and hereditary breast and ovarian cancer.810 Whether people with these diseases disclose genetic information to family members depends on what they perceive to be the risks and benefits of doing so, how close they feel to family members, their sense of responsibility to family members, how they expect the family members to react to such information, their level of certainty about their own risk, and their own emotional readiness to disclose the information.2, 4, 7, 8

All that & a little more insight is found here.

As I’ve contacted & met with more than a dozen living relatives, the subject of genetic conditions has come up. It was inevitable, really, because among the most common reasons people go looking for kin is medical in nature. On a few occasions, when I contacted people, one of the first things they assumed is that I wanted genetic information, which I do, if they want to give it. But that’s not why I contact them, I really just want the stories about the people, but getting those stories comes with a responsibility I didn’t anticipate. My job now includes establishing trust. Lots of it.

Legit Reasons

A piece of wisdom I was aware of -but have just experienced the full application of in the last couple weeks-  is that the unknown medical conditions our ancestors may have had could explain a lot of decisions they made which are responsible for where we are now. For example, I have a cousin who died when she was 30 something, and as I read through her will & questioned the decisions she made & then read through the wills of those beneficiaries of her estate when they died, I got really curious about what condition caused her death. Her poor health was directly related to her husband’s poverty & responsible for generations of struggle. If they knew for sure that she had a bad heart, then we’d know that was a genetic thing to follow up on in with her descendants, but, they had no idea what caused the sudden breakdown of her health. Looking at her ancestor’s death records might not be helpful (even though I will get around to it anyway) and since the records from her decade are so bad, I am not hopeful for answers. Living relatives she has today, though, could certainly entertain themselves by putting together a circumstantial case if they tried hard enough to collaborate & compare their own medical records. One of them may have a condition which is easily diagnosed & treated today but was not at that time. Mystery could be solved & her story finally told.

 

*Adopted and Donor Conceived actually NEED genetic information & they recognize it as a more urgent matter than the rest of us because they have NOTHING to start with. Those of us who know our bio families take for granted how much we DO know so it’s not as big of a deal to us to get additional information… until one of us has a sick child. We will do ANYTHING to help our children. Sometimes it’s too late.

Ask yourself: When you are approached by genetically related strangers, should you expect to just spill your guts? Every oddball lab result you’ve ever had? Now, think about those strangers being descendents of yours in 100 years, asking these questions of you. Is your answer different? Would you want them to know it all? Because the people asking YOU today are the descendants of the same person you are also a descendant of so it’s all relative (pun intended).

While it’s true that people generally LOVE talking about themselves & will tell you all about their unique characteristics… I especially understand why one might think, “I don’t know them & I don’t have time for that.” Especially if said one is related to ME, I get that & I respect it & I will tell ya what sense that makes in a minute. If you’ve been at the heart of this blog, you know that I’ve focused my recent energy on just one of my family lines that is quite… peculiar. I can say that because it’s MINE. They’re MY huckleberries and I can call them what I want to. Here I am trying to write our descendancy book to benefit all of our descendants & they don’t really wanna tell me anything nor do they wanna KNOW anything. We are an odd bunch in that we don’t really LIKE to talk about ourselves anymore than we have to. I am not even asking them for genetic info, really, just stories. A couple years ago I recognized this tendency about myself & decided to change it, so that’s how this website even exists… I decided to tell the story for at least one of us & if the rest don’t wanna be lumped in with me then they better get to talkin’ & tellin’ their own. Right? Right. So… back to the point.

III. What should you expect your living relatives to be willing to tell you about their genetic line?

Ideally, anything & everything that could save your life or the life of your children. What are you really gonna do to them armed with that info? So you find out your uncle’s got high blood pressure… what is the worst thing you could do with that? I mean, I guess in 100 years we could find out that EVERYBODY who had high blood pressure also had undersized reproductive tackle… ok I can see the problem with that info coming out in 100 years & your descendants thinking of you THAT way… but, really? #1. That’s being silly. #2. It’s 100+ years, you’re dead, who cares?

If you’re a genealogist who wants to know about certain conditions, think about what you specifically want to know & own the curiosity.

You can use incidents from the past to trace patterns into the future. If your collateral relativedaughter/granddaughter is born with a rare medical condition, you may be able to see it coming & be proactive about treatment decisions you make going forward IF you knew a little about the history you weren’t around to witness & had somebody to collaborate with. Maybe there’s a string of family that’s been dealing with hemophilia for generations, and it could all go back to a set of grandparents you share. You now have exposure to that as well as a pattern & things you can learn about choices you should make the moment your descendant is born with it too. Your collateral family could save your loved one’s life or you theirs.

If I had all conversations to do over, I certainly would let each person know that I am open to the discussion on a practical, conversationally appropriate level. If they have something to share, I would make sure they know that the information will stay between us if that’s what they wish, with the request that I might disclose it to save a life. That’s the plan going forward & I will see how it works. If I have ANY info that can be helpful, it’s all theirs.

You get to decide how you will handle being on each side of this, so give it some thought.


 

 

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