Canadian laws · Genealogical Research

Should you get a DNA test?

DNA kits are rising in popularity, so much so that they were among the top 5 items sold during Amazon’s Black Friday sale in November, 2017. They are so popular that Amazon offered 18 different types. In this post, I’ll offer what I see as the pros and cons, and my decision.

Reasons for getting a DNA test

Curiosity

I love curious people. The impulse to know more is why I started on my own genealogical journey, so a DNA kit seems to offer a lot for a little.

Genealogical Brick Walls – busted!

Google “DNA tests brick walls” and you’ll get a pageful of results from AncestryDNA, Family Tree DNA, Legacy Family Tree, etc. I reviewed an AncestryDNA video showing how the process works, from ensuring that DNA results are connected to the right person in Ancestry, to a plan for getting all the relatives tested. In this way, with a DNA grouping combined with an Ancestry tree, relatives may be found across Ancestry’s databases.

Imagine finding long lost cousins who share a common ancestor. This happened to me last week. Both of us, in our respective countries, have been engaged in genealogical research for years. According to the knowledge we have gleaned, our ancestors originate from the same race, country, counties, speak the same dialect, and carry the same Chinese character as the family name. Like detectives, we are hunting for clues to see if we are more than “village cousins,” and DNA might give us that answer.

Genetic predispositions for disease

Some genetic predispositions, such as cancer, diabetes, and obesity may be identified with a DNA test. It may be helpful to know, for example, if the family history of breast cancer affects you.

Angelina Jolie wrote in the New York Times of her decision to undergo a preventative double mastectomy as a result of learning she carries the BRCA1 gene.

www.past-presence.com
By Chakazul [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Who am I?

Many people take DNA tests to find their ethnicity. We’ve probably all seen the 23andMe or AncestryDNA commercials where people who thought they were one race turn out to be another.

I can imagine the hunger to know one’s own history in a closed / private adoption scenario. Taking a DNA test could answer the questions that nobody else can – or will – answer. Do you have siblings? How accurate is the testing? Here’s the YouTube link to the Today Show’s Dec 2017 test of the the accuracy of sibling matching.

Reasons against DNA testing

Are you ready for the results?

The joy and curse of genealogy is the gradual discovering of facts. New clues about your ancestors are like chocolates in an Advent calendar – slowly enjoyed and eagerly anticipated. My ancestors endured harsh conditions. As a sympathetic historian, processing some of these facts has taken an emotional toll on me.

Genetic counselling

Many people are underprepared, and for them there are now counsellors trained in genetic testing: genetic counsellors. DNA tests can reveal markers for genetic diseases… but the accuracy and process of acquiring that information, what tests are used, and most importantly, how they are interpreted, can vary widely. There have been false positives, and flat out wrong results.

Family secrets

On a related note, DNA tests can reveal family secrets that would tax the ethics of a professional genealogist. Human life is full of unexpected surprises, and not all of them are happy surprises. There are cases of rape and incest, of half-siblings who are the products of affairs, and babies born by means of in-vitro insemination.

Any information that makes us question our origins is information that needs very careful handling, and often, years of processing, reconciling, and adjusting. That’s a lot of pressure in one envelope, all at once.

Family dynamite

How life-changing would it be to suddenly have to reassess your roots? For that, I leave it to two talented novelists to tell their own stories of explosive discovery.

Wayne Grady discovered the clues to his own lost family ancestry in a census record in Windsor, ON. His book Emancipation Day took twenty years to write, and is a powerful creative non-fiction work inspired by the story of his father who was a black man who was light-skinned enough to pass as white.

Wayson Choy was touring Canada for his 1995 novel The Jade Peony when a stranger called to tell him a truth known to all in the Chinese community except him – he was adopted. The phone call inspired his 1999 novel Paper Shadows.

The ethnicity results may depend on the test kit

DNA test results can vary by test kit. Each company has its own processes for analyzing the data, and produces results with a margin of error. Remember statistics and the confidence interval?

Let’s take a common example of statistics: the political poll. My pet peeve is seeing a result like this: Conservatives 22%, Liberals 20%, NDP 19%, with a confidence level of 95%, with a margin of error at +/- 3%. The Cons are in the lead. What’s wrong with that?

95% sounds pretty confident, right? The trouble is, a 95% confidence level simply means 19 times out of 20, or 95 out of 100 people.

It’s the margin of error where things go completely sideways. In this example, there is only 3% separating the 3 results, meaning all results fall within the margin of error (19+3=22), which means the results are misleading, if not completely wrong. In this case, there is no party leading.

DNA kits such as 23andMe offer a 50% confidence interval. The Legal Genealogist calls such results no more than “cocktail party conversation” in her article “Those percentages, if you must.”

The law is struggling to catch up

Did you know that until Bill S-201 – the Genetic Non-Discrimination Act (the “GNDA”) was passed into law 9 months ago (on May 4, 2017), Canadians were at risk of discrimination based on the results of genetic test results?

In the USA, where the Genetic Information Nondiscrimination Act has been in place since 2008, some 300 cases / year arise from people suing because their genetic tests uncovered information which prevented them from being able to buy health and / or life insurance.

In my view, Canada was slow to add genetic data to the list of rights protected by the Canadian Charter of Rights and Freedoms, and the real tests of how the GNDA will be interpreted  is up to the courts, on a case by case basis.

The government makes laws, but the judges decide how those laws will affect people. It’s a work in progress.

What am I giving away?

To take just one example, see Ancestry’s Terms & Conditions below (copied directly from the site on 24 Jan 2018):

That by providing a DNA sample or Additional User Information to us, you acquire no rights in any research or commercial products developed by us or our collaborators and will receive no compensation related to any such research or product development; [emphasis added]

I understand the science of genetics like a dog understands English – I think I’m getting it, but I’m really not. But what I do understand is that we have barely begun to understand the potential of genetic research, never mind put a price tag on its value. I am nervous about giving away something that is inherently mine, with that degree of potential, forever.

For example, take the 2004 case of the American Havasupai Tribe. They had originally consented to the collecting of their genetic material for the purpose of studying diabetes, but found later that the study grew to include investigating “population evolution, schizophrenia, and inbreeding.” They sued Arizona State University for a long list of items from civil rights to misrepresentation.

No DNA tests for me

I am very curious. If I let my curiosity drive this bus, I’d have done a DNA test a long time ago. I am absolutely enthralled with the idea of learning more about my origins – that’s part of the reason why I’m such an avid genealogist.

Maybe the caution comes from the decade I spent as legal assistant, dealing with rights, reparations, privacy, and risk. Also, I’m fortunate that breast – and other – cancers do not run through my family, I was not adopted, and I’m most likely 100% Chinese.

So for me, the answer is no DNA tests. Not now.

How about you? Are you considering DNA tests? Have you done them already? I’d love to hear from you.

www.past-presence.com
DNA, by Caroline Davis, 2010. under CC licence 2.0.

Sources

5 key things to know about the margin of error in election polls. (2016 Sep 8). Mercer, A. From the Pew Research Center Fact Tank.

Bill S-201 – the Genetic Non-Discrimination Act. Retrieved 2018 Jan 25 from OpenParliament.ca.

Ethical issues in developing pharmacogenetic research partnerships American Indigenous communities. (2011, Mar). Boyer, B.B. et al. From PubMed Central Canada.

My grandmother was Italian. Why aren’t my genes Italian? (2018, Jan 22). Grayson, G. From NPR’s Health Inc.

My medical choice. (2013 May 14). Jolie, A. Retrieved 25 Jan 2018 from the New York Times.

Review of Paper shadows: a Chinatown childhood. Choy, W. Retrieved 26 Jan 218 from Quill & Quire.

Those percentages, if you must. (2016 Aug 14). Russell J.G. Retrieved 25 Jan 2018 from The Legal Genealogist.

Wayne Grady: stranger than fiction. (2013, Aug 1). Retrieved 26 Jan 2018 from The National Post.

What DNA testing kits can – and can’t – tell you about history, health. (2018, Jan 11) Gunderson, E. From Chicago Tonight.

4 thoughts on “Should you get a DNA test?

  1. Great read, Linda. I am one of the people who took advantage of the Black Friday sale and have the kit on my bedside table waiting for me to get to it. I already know I have several cancers and heart disease in my family. I also have family trees to follow, but there are gaps caused by early deaths and mistakes in census and other forms. I want to know more of the story! It’s the curiosity…

  2. I’m in the “absolutely!” camp. I’ve done autosomnal DNA with both Ancestry and FTDNA, and have tested several family members as well. I have no interest in the health information. The ethnicity reports told me nothing I wasn’t expecting (close to 100% European – I’m Whitey McWhitester, so no surprise there!), though it was kind of interesting to see the results of millennia of human migration. I have mostly English and Scottish ancestors, and my DNA results show some Scandinavian. Those Vikings got around!

    For me, it’s all about the genealogy, and the way I see it, DNA is as important a genealogical tool as the census. Moreso, in some respects, because DNA doesn’t lie but people do. I agree that you have to be prepared for the unexpected, but if you go into it with eyes open and no judgements, there’s so much you can learn. I have connected with many more new cousins through DNA matching than I have through genealogy alone. My husband never knew his biological father – he now has a name, history and some cousins on that side. I’ve had some family stories proven and some others disproven. And yes, I’ve broken through some brick walls, and hope the DNA will help break through others.

    1. Hi Leanne – absolutely – it’s a deeply personal choice based on multiple factors. I’m deeply intrigued in DNA because there is a likely distant cousin in Australia and we’d both like to know if we are truly related.

      I take your point about the absolute nature of DNA: DNA doesn’t lie but people do. So well phrased! And if there was an adoption story in my history, I would most likely move quickly into the pro-DNA camp.

      Thanks for stopping in!

      Linda

Comments

This site uses Akismet to reduce spam. Learn how your comment data is processed.