We need to reframe the debate about “rights” to accessing your own DNA data

I had a reporter ask me once why genetic counselors don't agree with the 23andMe perspective that everyone has a "right to their own data." I was confused because that isn’t my experience with what genetic counselors believe, nor do I see my own perspective differing from 23andMe CEO Anne Wojcicki’s oft-repeated mantra that people have a right to their own information.

My response to the reporter was this: We actually don't disagree but we differ on the nuance. Where genetic counselors often differ from other free-the-data the advocates at this point is our persistence in believing that everyone has a right to accurate results when their DNA is tested and a right for their results to be presented to them in an understandable way. People also deserve to know their testing is almost never their FULL DNA sequence, which is a common point of misunderstanding that advertisements and TV commercials are glossing over at this point.

There has been some progress in the the world of at-home testing, but it is still not perfect.

I am proud to be a genetic counselor supporting the rights of people to access testing at home while simultaneously advocating for improvements to the way it is reported. Have you already tested and have you been confused by your 23andMe or Promethease or other report? Me too! The 23andMe macular degeneration report for people who get a positive result is pretty bad at explaining risk, for example. But some of the other reports are redeeming. There is still great room for improvement with reports from 23andMe and other at-home tests and third-party tools.

I’ll extend this point to the discussion surrounding access to raw DNA data files as well.

Providing someone access to their DNA raw data isn’t leveling the playing field, neither is it particularly “empowering.” If anything, access to raw data is creating a divide between people who have to accept their at-home testing results as “true” and those who realize their limitations and can navigate the system to find and afford genetic counseling and pay for confirmatory testing. Like Laura Hercher reported in her NY Times opinion piece and like Matt Fender emphasized in the lengthier interview about his experience getting confirmatory testing for a worrisome Alzheimer’s DNA result.

Those who FACe difficulty and barriers navigating the process of figuring out whether to believe a finding in the raw data are left in limbo.

They may end up carrying a lifelong belief (one that is possibly wrong) they have a terrible genetic fate ahead. Or they may have been falsely reassured by their report/results and fail to identify actualy, real risks and then follow up with medical management that can slow the onset of a medical condition looming in their future.

I’ve pointed out the shortcomings of raw data in past posts using some examples from my practice

Most simply put, giving people raw DNA data files out of context is not equivalent to granting people rights to their own data.

Every time this comes up, and two are conflated, I am aggravated.

The “rights to your own data” debate needs to be reframed. We are beyond the point of debating whether people have a “right” to their own info. It’s pretty much the majority that believe you don’t keep someone’s info from them because it’s in your own personal or professional interest to do so.

The debate at this point should be about rights to accurate information with support in making sense of it.

Please make sure to make this point any time you see the conflation of “rights to DNA data” being used as a proxy for equality and better health care.

Making Your Existence Known to Bio Family - Should You or Shouldn't You?

Making Your Existence Known to Bio Family - Should You or Shouldn't You?

I had someone reach out to me a few months ago who was adopted and had reunited with his birth mom before she died after she sought him out. He never had interest in seeking out and reuniting with his birth father but accidentally matched to his (now deceased) bio father's family (an entire set of half-siblings) when doing an ancestry DNA test.

"What is NPE?" - A guest post by Steven King provides information and support for the surprise discovery in your family

Steven King was on the Megyn Kelly Today show to share about discovering secrets kept for decades regarding the biological origins of his father. Steven reports that he’s doing great now, and that his family expanded as a result of the discoveries, but getting to that point was not easy.

With his permission, I’m sharing the story he posted on Facebook to help grow the awareness of these surprises and to help others going through it get connected to support and information. Some of the links Steven provides are also found in the “Resources for You” tab of this website. -Brianne


What is NPE? by SteveN King

A Non- Paternity Event (“NPE”) was originally the term used to explain the break in the paternal line for a male. In genetics and genealogy, the term signified that a person’s attributed father was not their biological father and that the family surname did not match the bloodline. Someone was presumed to be an individual’s father by the individual, the parents, their family or the healthcare practitioner involved. Today, the term is used more broadly to describe a break in the family line; for males or females with a misattributed father or mother. The acronym “NPE” is also used to describe individuals who learned they were conceived as a result of the event. Some also use the acronym to mean “Not Parent Expected.” 


Non-paternity events may result from adoptions, donor conception, intercourse with multiple sex partners in close succession, non-consensual sex, medical errors and in certain cases of being kidnapped as an infant. In many cases, the non-paternity event is enshrouded in secrets and lies by the individual’s family and the individual does not know that they are the result of the non-paternity event.

 
With the advent of home DNA testing, troves of individuals are learning of a non-paternity event within their own families. The revelation or discovery of the NPE can have a life changing impact on the individual who learns that they are the result of the non-paternity event or misattributed parentage. Alarming numbers of individuals discover that their mom or dad, grandfather or grandmother was not who they were reported to be. In many cases, the individual welcomes learning their truths and finds the knowledge empowering. For others, it can be devastating and catapult the person into a complex psychological experience for which there are not adequate mental health programs in place at the present time. 


Many individuals devastated by this experience find that the impact is compounded because their closest family and friends do not understand the implications of this discovery. Society, in general, has not fully accepted the value identity has for a person and so most do not know how to support a person who feels that part of their identity was taken away with the results of a test taken in many cases for entertainment. In addition, when a person with this experience reaches out to their newly determined biological family, they often times encounter rejection and are left to feel guilt and shame because of the events surrounding the non-paternity event when they obviously had no involvement in it but were created as a result of it. 


The NPE Friends Community is a global network of support programs for those who are impacted by a non-paternity event. These programs include social media support groups, community awareness programs and additional resources for those impacted. We hope to increase awareness of this event and the impact on an individual. We promote open disclosure about a person’s identity by their family and are a developing programs to educate the public, including the mental health community, on the impact of this event on an individual. 


I invite you to share this post with your family and friends to help promote open dialogue about non-paternity events. Let us all acknowledge the value that identity holds and realize that none of us have the right to withhold or deny information from an individual about their own individuality. More importantly, because a revelation of non-paternity event in your family is likely to emerge and may prompt someone to come knocking on your door, please be sensitive to the person impacted and understand that they are only trying to cope with learning that they were denied basic information about their own individuality, their own soul, their own being. Please remain mindful that they had no part in the events that created them and should not be penalized for the actions of those before them. 

If you or a family member were impacted by a non-paternity event, the NPE Friends Community is available to assist you.

One can find us on Facebook at by searching for "NPE Gateway" The gateway is used for screening new member requests for entry into one of the NPE Friends groups best suited for their situation.

The NPE Friends Community is also associated with The NPE Friends Fellowship, a nonprofit organization to assist those impacted by this experience. https://www.npefellowship.org/

To learn more about this experience and growing phenomenon, listen to the words of some of those impacted.

Links out to more coverage of the NPE topic:

The Atlantic https://www.theatlantic.com/…/dna-test-misattribute…/562928/ 07/17/2018

Good Morning America https://www.youtube.com/watch?reload=9&v=Cc8kLc_fAS8 07/30/2018

ABC News Nightline https://abcnews.go.com/…/dna-test-upends-identity-fi…/story… 07/30/2018

WGNTV Chicago’s Morning News https://wgntv.com/…/woman-shares-her-story-after-dna-resul…/ 07/31/2018

The New York Post https://nypost.com/…/ancestry-tests-are-revealing-shocking…/ 08/11/2018

The Lacrosse Tribune https://lacrossetribune.com/…/article_95589d3b-65e6-597b-8d… 8/13/2018

NBC’s Megyn Kelly Today 09/07/2018 (3 segments)
https://www.youtube.com/watch?v=lJnNZzEYv1s Catherine St Clair
https://www.youtube.com/watch?v=5Pamc0tiEY4&t=72s Steven King
https://www.today.com/…/how-to-handle-shocking-dna-test-res…Genetic counselor, Brianne Kirkpatrick, & family psychologist, Jennifer Harstein

Dr. Oz’s Show 10/03/2018 (broken into a few segments after the pancreatic cancer segment)

https://www.doctoroz.com/episode/deadly-diagnosis-3-ways-you-can-reduce-your-risk-pancreatic-cancer?video_id=5844918031001

Please help me educate the public by sharing this post with your family and friends. Thank you!

stevenkingheadshot

- Steven King


Readers, if you learn of new resources or stories about NPE/Misatributed Parentage, reach out to me through the website to let me know. I’m always happy to add new items to the resources section. - Brianne

DNA Surprise: Two sisters bond as they keep the secret of their shared DNA father

DNA Surprise: Two sisters bond as they keep the secret of their shared DNA father

I came to know Michelle and Eden when they joined the first secret support group I set up for people receiving DNA surprises for themselves or for someone’s DNA account they manage.

I asked the two of them to respond separately to some questions I had. The responses shed light to us as readers on how the same “DNA Surprise” event can be experienced differently.

You can read their detailed responses in the post here.

National Society of Genetic Counselors posts leaders' experience with ancestry testing for Hispanic Heritage Month

Two lovely genetic counselors and leaders within the National Society of Genetic Counselors paired up to experience and write about having ancestry testing to learn more about their Hispanic roots. As NSGC’s Ancestry Expert, I was invited along to provide commentary. The post went up recently, just in time to recognize Hispanic Heritage month. Check it out!

DNA Testing: Ten Tips for Adoptive Parents

DNA Testing: Ten Tips for Adoptive Parents

I’ve spoken with a few parents of children who were adopted, and DNA testing is clearly on the radar for many of these families. News reports and TV shows that highlight adoption reunions facilitated by DNA and health discoveries from genetic research have piqued the interest of many.

I’ve compiled ten tips for adoptive parents based on common questions and issues. The focus is on parents of children under the age of 18, but these points can apply to other families as well, such as those who included egg, sperm, or embryo donation in building their family.

Bringing you the latest Base Pair, Marc and Janet

Bringing you the latest Base Pair, Marc and Janet

The Base Pair posts are a series I started to highlight professionals in medical genetics who are a stellar team or have a special history that bonds them, like genetic base pairs A, T, G, and C in a DNA double helix. This Base Pair post is about Janet and Marc Williams, a beloved pair in the world of medical genetics and genetic counseling.

Digging Deeper into a Promethease Finding Before Accepting It as Truth

Digging Deeper into a Promethease Finding Before Accepting It as Truth

I recently worked with a client who was adopted and had used a raw data file and the Promethease tool as an avenue to obtain some health/medical information for herself.

This case gets a little complicated but please stick with it; it demonstrates a lot of the areas where there is weakness in our understanding and communication of medical genetics data.

The case also highlights the importance of doing deeper investigation of findings that show up on a Promethease report, before accepting the report’s summary at face value. I write about 23andMe and Promethease in the summary, but my conclusion is true for any tool (Genetic Genie, Sequencing.com reports, etc.) run on any raw data file (AncestryDNA, MyHeritage, etc).

Megyn Kelly Today Shows covers "DNA Shocks"

Megyn Kelly Today Shows covers "DNA Shocks"

Megyn Kelly is a host on NBC who covers a lot of DNA topics on her weekday talk show, Megyn Kelly Today. Last week, she invited myself and a few other guests to talk about either personal or professional experiences related to DNA shocks or surprises. If you missed it, you can view the three segments below.

Orientation to the Watershed DNA Website

If you have come here as result of seeing the Megyn Kelly Today show segment on DNA shocks, welcome! I want to familiarize you with the Watershed DNA site so you can find the information you came here to look for. 

Across the top of the screen (or along the right hand side, if you're on a smart phone), you will find the navigation bar. It may look like a series of three lines. If you click on it, a menu of tabs will appear. 

Confidential online support groups for DNA surprises

I started a few secret support groups that were discussed here in an article by Sarah Zhang, writer for The Atlantic. I originally started these groups for a friend and some clients who expressed a desire for support and understanding from others who who had been in their shoes before. Since then, the groups have grown to include people who have heard about the group via word of mouth, past blog posts, and interviews I've given in which I've discussed them.

Draft Language for Reaching Out to a DNA Match

I've gotten some questions about how to approach an unexpected DNA match and try to open up the lines for communication. I've posted some draft language here for you to get a sense of what I've written or advised other people to write in the past.