5 Tips for an Adoption-Related Search

A few months ago, I wrote about the DNA Quest program for adoption-related DNA searches going on at MyHeritage. They have closed the program to new enrollees at this time but may open again in the future as additional resources become available. Here's a guest post I wrote for their blog with my five top tips for an adoption-related search. You might be surprised that some of them are DNA-related and some are not!

  (condensed for this post; link to full version below) 

(condensed for this post; link to full version below) 

  1. Cast a wide net
  2. Prepare for the unexpected
  3. Explore all your options for matching
  4. Identify people and resources to support you along the way
  5. Seek out an adoption-competent counselor

Read more details about each of these tips here on the MyHeritage blog!

DNA security: my thoughts in the wake of the Golden State Killer case development

The use of the genealogical DNA website called GEDmatch to solve a long history of crimes perpetrated by the Golden State Killer has a lot of people wondering, “Should I be concerned about the privacy and security of my DNA?” There is nuance to this question. One person who asks it might be asking whether a company might give away their information without permission. Another one might be more concerned about whether someone with ulterior motives could 'hack' the system at a company (or at an independent DNA sharing site) and take data not approved by customers or users.

Without getting into the weeds too deeply, my opinion on this in a nutshell is this:

Think of DNA security the way you think about credit cards. 

Some people opt out of using credit cards because they know of theft; it’s happened to them or someone they know. Or they are generally worried about it even if they've not yet been affected personally. Other people may weigh the risks of private information being stolen if they use a credit card (or other digital payment system like PayPal), but then decide the ease of using them is worth the risk. It has become culturally normal to use credit cards and online payment systems, and the risks are understood and accepted. 

It almost seems as if no one expects perfection in credit card security. So it is becoming for DNA testing as well.

There will always be a spectrum of how much risk people are willing to take, and that’s ok. We all are different and have had different experiences that attune us to what ought to be cause for worry. What concerns us is not the same as what concerns others. 

The reports of genetic information being 'stolen by bad guys' are non-existent at this point; however, law enforcement has tried to get genomics companies to turn over information, mostly unsuccessfully. The Golden State Killer case recently in the news was a situation in which the absence of laws and regulations around publicly-shared information about DNA matches meant law enforcement was free to use it in a way that helped them solve their case. This wasn't stolen information, per se, but few people who had uploaded their computerized DNA information to GEDmatch seem to have anticipated this use. Some are okay with it, some are not (and have reached out to request their data be deleted).

Are you okay with the use of DNA from family members by law enforcement to solve cases of murder and rape? There isn’t a right answer to this one, but we should still be asking it and discussing it.

What about DNA being held by private companies, like 23andMe and Ancestry.com? In comparison to third-party DNA sharing sites where 'user beware' is the expectation, genomics companies have it in their interest to keep your information as secure as they can -- their reputation hinges on it, in a way.

So they are trying, but in spite of all efforts including the employment of folks with titles like "Chief Security Officer", it might be possible in the future that their security fails. Or that they slip in some language into the terms of service agreement that gives them more freedom to use and share your DNA information than you fully understand.

So bottom line, do I think you should take a DNA test? 

You probably aren't surprised that my answer is the decision falls right back on you.

If you’re ok with the chance of your DNA being used in unique ways or in going farther than you imagined it would in order to answer other people’s questions, take the test. If not, testing might not be right for you. 

-Brianne

Interested in reading more about the Golden State Killer case and how genetic genealogy was involved? This blog post by genetic genealogy blogger Debbie Kennett compiles many relevant articles related to the case.

Want help in understanding the terms of service before you send in your DNA sample or share your computerized DNA file with a third-party website? I'm a licensed and certified genetic counselor, and "seek informed consent" is one of my mantras. Schedule a one-time session with me, and I'll be happy to help you go through the terms you're being asked to agree to.

5 Things to Pay Attention to in your Family History

Some families and its members are more comfortable with sharing medical history information. In other families, it is harder to learn this information. Small family size, less communication about difficult subjects like health and illness, and lack of continued communication over time between relatives can make these challenging. When you have the chance to gather health information from family, what should you focus on?

When you have the chance to gather health information from family, what should you focus on?
  1. Common conditions - Most conditions that people develop are complex, meaning they are caused by a combination of multiple genes, exposures in the environment, lifestyle choices, and aging. We can tease out the genetic factors for some of them and not for others. Look for patterns in your family: Does high cholesterol run in your family? Heart attacks? Have similar cancers popped up in multiple generations or in a group of siblings, for example?
  2. Rare diseases - When we look at three or four generations of a family, most families will have at least one member who has a rare disease or has experienced a lengthy, complex medical history. We are finding new genetic causes for these situations every year. However, not everything genetic is also hereditary or a concern for other family members. The information you gather about a rare disease in the family (its name and how the diagnosis was made, for example) can help to later determine if anyone else might be at risk.
  3. Age of onset - The age at onset or diagnosis of a medical condition is often the most value-added piece of information. Your Aunt Sal may have developed breast cancer, but was she age 28 or age 68 when it happened? This can make a big difference to risks for others in the family. Take note of how old a family member was when they experienced a medical crisis or health issue, especially for neurologic, heart, and cancer-related issues.
  4. Ethnicity - Some markers in your DNA can indicate ethnicity, some are associated solely with health risks, and some represent both at the same time. Belonging to a certain ethnic population can place you at higher risk of some conditions, especially if you’ve descended from a small, isolated ethnic group. Examples of this are Old World Amish, Ashkenazi Jewish, and French Canadian populations. Ethnic background alone isn’t a reason to meet with a genetic counselor, but expect it to come up during a discussion of family history.
  5. Young death – “Young death” includes cases of sudden infant death, unexplained accidental deaths in children/young adults, and sudden cardiac events, like a heart attack in a young person. These issues can be seen to run in families, and now, we have some tests available to search for possible genetic causes. If you see this pattern in your family, schedule to meet with a genetic counselor to review your family history, talk about genetic testing options, and identify who is the best person in the family to test first. 
Genetic counselors help sort out what conditions might have a stronger genetic component to them and determine if any testing is relevant and available.

Genetic counselors help sort out what conditions might have a stronger genetic component to them and determine if any testing is relevant and available. They also identify what rare diagnoses are of greater or lesser concern to others within a family. To partner with a genetic counselor to make your family medical history useful, reach out through my website, www.watersheddna.com. You can also visit www.aboutgeneticcounselors.com and use the “find a genetic counselor” search tool to search for a genetic counselor by area of specialty, hospital system/organization, and more.

This article originally appeared in the May 2018 issue of Trail Living Magazine.

MyHeritage announces DNA Quest Program for Adoptees and Birth Families

I am so excited and honored to be part of the advisory board for the newly-announced project to help adoptees and birth family access DNA testing. This program will make DNA kits available for free until April 30, 2018 to a set number of adoptees and birth family members worldwide who want to make use of DNA testing and genetic genealogy to identify one another. The program just announced its expansion beyond the US to worldwide within the past few days. You can read more in the press release below (revised to reflect global availability) and follow links to the site where FAQs about the program are answered. 


MyHeritage Launches DNA QUEST — A Major Pro Bono Initiative for Adoptees and their Biological Families to Find Each Other via DNA Testing

MyHeritage will distribute 15,000 DNA kits, worth over one million dollars, for free in the first phase of this initiative

TEL AVIV, Israel & LEHI, Utah, March 1, 2018 — MyHeritage, the leading global destination for family history and DNA testing, announced today the launch of a new pro bono initiative, DNA Quest, to help adoptees and their birth families reunite through genetic testing. As part of this initiative, MyHeritage will provide 15,000 MyHeritage DNA kits, worth more than one million dollars, for free, with free shipping, to eligible participants. Participation is open to adoptees seeking to find their biological family members, or anyone looking for a family member who was placed for adoption. Preference will be given to people who are not able to afford genetic testing. Application opens today on the project website, www.dnaquest.org, which includes detailed information about the initiative.

Many of the approximately 7 million adoptees living in the USA today (and even more globally) are searching for their biological parents or siblings. The search is time-sensitive, because every year some of the people who are searching pass away, missing the opportunity to reunite. Currently, the main avenues for adoptees and their biological parents to find each other are adoption agencies, registries created for this purpose, and genetic testing. With formal adoption records being unavailable or difficult to obtain in some states, genetic genealogy opens new doors in the search for relatives, and MyHeritage believes everyone should be able to access this valuable technology.

To maximize the potential of this initiative to successfully reunite families, MyHeritage has set up an advisory board of top experts in the fields of genetic genealogy and adoption to guide and support this initiative on a voluntary basis. This alliance ensures the best possible professional support for participants, with each advisory board member bringing unique expertise. The advisory board includes: CeCe Moore, founder of DNA Detectives; Blaine Bettinger, The Genetic Genealogist; Richard Weiss of DNA Adoption; Richard Hill, DNA testing adviser; Katharine Tanya, founder of Adopted.com; Brianne Kirkpatrick, founder of Watershed DNA; Pamela Slaton, investigative genealogist; Leah Larkin, The DNA Geek; and Amy Winn, President of American Adoption Congress.

DNA Quest is an expansion of another one of MyHeritage’s successful pro bono projects to reunite adoptees from the Israeli Yemenite community with their biological families. In that project, MyHeritage facilitated successful reunions between adoptees and their biological siblings, in challenging cases where the protagonists were searching for each other without success for more than 60 years.

“We have a company culture of using our resources and technology for the greater good. In this spirit we’ve initiated several significant pro bono projects, such as returning looted assets from WWII to their rightful owners and documenting family histories and traditions of tribal peoples who lack access to modern technology. DNA Quest is a natural extension of these efforts,” said MyHeritage Founder and CEO Gilad Japhet, who conceived DNA Quest. “There is a great need for a project like this — to help adoptees find their biological families — and we are the right company to take it on. We’ve already successfully reunited many families and are confident that through this initiative, together with a wonderful alliance of top experts, we’ll be able to utilize the power of genetic genealogy to help many more.”

“Few things are more fulfilling than a life-changing adoptee-family reunion”, said CeCe Moore, founder of DNA Detectives, the largest group on Facebook that brings together volunteers with genetic genealogy and searching experience, and those seeking biological family. “I’m very excited to be a member of the DNA Quest advisory board and look forward to assisting participants find the lost loved ones for whom they are yearning."

There are already more than 1.25 million people in the MyHeritage DNA database — one of the fastest growing among the major DNA companies. Additionally, MyHeritage is unique among the top three DNA companies to offer the option to upload DNA results from other test providers for free. The company is uniquely positioned to reunite families and has indeed facilitated many emotional success stories, with more taking place in every passing day.

Adoptees and family members searching for their biological relatives can apply for a free MyHeritage DNA kit at DNAQuest.org through April 30, 2018. Participants will be selected, and their free DNA kits will be shipped to them by the end of May 2018. Results are expected as early as July 2018.

Those who have already taken a DNA test with another company can upload their DNA data to MyHeritage for free and participate in this initiative as well.

The privacy of all applicants and participants will be strictly enforced. The DNA is owned by the participants and not by MyHeritage. The company has never sold genetic data and has pledged to never do so in the future without users’ explicit consent. DNA Quest is a pro bono project without gotchas or caveats.


About MyHeritage

MyHeritage is the leading global destination for family history and DNA testing. As technology thought leaders, MyHeritage has transformed family history into an activity that is accessible and instantly rewarding. Its global user community enjoys access to a massive database of historical records, the most internationally diverse collection of family trees and groundbreaking search and matching technologies. Launched in November 2016, MyHeritage DNA is a technologically advanced, affordable DNA test that reveals ethnic origins and previously unknown relatives. Trusted by millions of families, MyHeritage provides an easy way to find new family members, discover ethnic origins, and to treasure family stories, past and present, for generations to come. MyHeritage is available in 42 languages. For more detail, visit www.myheritage.com. DNA Quest is available on www.dnaquest.org.

Contact

MyHeritage

Rafi Mendelsohn

Director of PR & Social Media

Phone: 917-725-5018

Email: pr@myheritage.com

Taking a temporary blogging hiatus to celebrate a new family member

Hello, readers! I am so glad to see more of you visiting my blog and the Watershed DNA blog readership as a whole growing with each new post. I wanted to let you all know I'll be taking a hiatus from posting for a few months to focus on the addition of our new baby. By summertime, I hope to be back at the keyboard and already have some new post ideas in mind for when I return.

If you are a new reader, maybe you'd like to go back and review some of my past posts. I recently added a search box to the bottom of the page to make it easier to search the blog history based on topic. Scroll down to the bottom and try searching for terms of interest to you. I've tagged posts using these terms in the past:

  • 23andMe
  • ABC27
  • adoptees
  • adoption
  • advice
  • All of Us project
  • alpha-1 antitrypsin deficiency
  • Alzheimer's
  • ancestry testing
  • anniversary
  • APOE
  • Are Your Parents Related?
  • Baltimore
  • Base Pair
  • blog
  • Bone Marrow Transplant
  • Carrier Screening
  • Chimera
  • Chimerism
  • classes
  • conference
  • consultations
  • consumer awareness
  • cousin couples
  • direct to consumer DNA
  • DIY
  • DNA
  • DNA Quest
  • Dr. Oz
  • DTC genetics
  • education
  • event
  • expertise
  • Family
  • Family Health History
  • family history
  • Finding Your Roots
  • GEDmatch
  • genealogy
  • genetic counseling
  • genetic counseling assistants
  • genetic counselor
  • Genetic Counselor Awareness
  • Genetic Genealogy
  • genetic testing resource
  • genetics
  • genomics
  • gift
  • grandparents
  • GRIP
  • guest blogger
  • Health
  • helping
  • Home DNA Test
  • information
  • infosheet
  • interview
  • James Madison University
  • JMU
  • LHON
  • Maya Angelou
  • Media
  • medical genetics
  • mentoring
  • mitochondrial DNA
  • MTHFR
  • MyHeritage
  • news
  • NGS
  • NIH
  • NSGC
  • NSGC Gene Pool
  • nutrigenomics
  • NYMAC
  • online testing companies
  • Parkinson disease
  • PBS
  • Pedigree
  • Pittsburgh
  • poem
  • precision medicine
  • Presentation
  • Promethease
  • public policy
  • radio
  • raw data
  • regulations
  • research
  • resources
  • ROH
  • sharing
  • Small business
  • SNP
  • social media
  • speaking
  • STEM
  • Stem Cell Transplant
  • story
  • support
  • surprises
  • TapGenes
  • tele-genetics
  • telomeres
  • Third Party Sites
  • Tools
  • Twitter
  • unexpected results
  • utility
  • VaAGC
  • validity
  • variant
  • Video
  • Virginia
  • VOUS
  • VUS
  • Watershed DNA
  • Webinar
  • websites
  • WES
  • whole exome sequencing
  • writing
  • YouTube

Best wishes for the rest of the winter and blessings for a mild springtime!

Filtering a Promethease Report: One Genetic Counselor's Strategy

There's no right or wrong way to filter through the results of raw genomic data and no professional standards or guidelines about how to do. So I've come up with my own strategy for how to do it out of necessity. It's a common request I receive, and in my quest to help people get proper genetic counseling and the appropriate follow-up testing and/or recommendations, I'm happy to try to help.

There are many reasons you should not rely on a Promethease report or consider raw data to be accurate health information, which I've written about in prior blog posts (and posted a video on YouTube) in the past:

https://www.watersheddna.com/blog-and-news/8-key-points-about-a-raw-data-file

https://www.watersheddna.com/blog-and-news/raw-data-what-is-it

https://www.watersheddna.com/blog-and-news/thirdpartyversusclinicalreport

https://www.watersheddna.com/blog-and-news/thoughts-on-promethease

But don't just take my word for it! Also consider the warnings from the companies and tools themselves, like this fine print on one page of the 23andMe website:

"This data has undergone a general quality review; however, only a subset of markers have been individually validated for accuracy. As such, the data from 23andMe's Browse Raw Data feature is suitable only for research, educational, and informational use and not for medical, diagnostic or other use."  

I know many people will try to make use of their raw data anyway, so here is my guidance for the folks turning to Pomethease. **Again, I want to emphasize this is only one approach, and until there are standards I am not claiming this guidance as personalized medical advice for readers in any way.**

Brianne's Five Steps to Filtering a Promethease Report

  1. Scroll down to the bottom of the report page and set the visualization tool to the "color blind" setting. 
  2. Set “Magnitude” at a minimum of 3.0 and leave maximum at its standard setting (4+).
  3. Turn on the “ClinVar” button.
  4. Scroll down to the bottom to the ethnicity section (at the bottom right), and uncheck all the ethnicities that do not describe you.
  5. If you used a raw data file from recent testing at Ancestry.com (v2), be aware there are many false positives ("miscalls") that seem to be creeping up. Miscalls happen with other company's data as well, so read through to see if any of your markers are referred to as “miscalls” in the Promethease report for the particular company you used.  

The first step is optional, but I recommend it because I've found that viewing the genetic markers listed on a Promethease report using the default color setting (red is listed as "bad" and green as "good") can be psychologically misleading and distressing to some people. This report isn't diagnosing you with medical issues, nor is it predicting your future. The genetic markers ("SNPs" or "snips") are simply risk-adjusters. And on top of that, raw data findings can be wrong

If you have any markers still remaining after filtering -- and especially if any relate to conditions already in your personal or family medical history -- I recommend you consider scheduling follow-up with a genetic counselor who is familiar with raw data and third party tool reports. You might have to shop around to find one because there aren't too many of us (at least not yet).

Genome Medical is one service that will see patients with questions about specific SNPs/raw data markers associated with health conditions. Genome Medical offers counseling via phone or video and can discuss the potential impact of that marker on your health and order follow-up confirmation testing if appropriate.  They do not currently work with patients to filter data or review the entire raw data file, so you will need to have already done the filtering process yourself. 

If you are someone who prefers an in-person type of interaction, you might search for a genetic counselor at a clinic near you. Start at findageneticcounselor.com and search based on location or the genetic counselor specialty (cancer, cardiovascular, reproductive, etc.). Some geographical areas and hospital systems may have a genetic counselor able to assist you and others may not.

Want help with the filtering process or a better understanding of the different filters and why they matter? I'm happy to assist. My schedule will open up again for these types of referrals at the end of the spring, so check back for my calendar to be reposted in May 2018, if you don't mind waiting.

-Brianne

Update on May 5th, 2018: My schedule is back up! Search for available appointment spots and sign up for one here: www.watersheddna.com/schedule. Your state of residence may determine if I can work with you, and if I can't help you (due to a licensing restriction in your state), I'll refer you on to someone who can. I'm unable to serve those who reside outside of the Unites States at this time.