Educating Ourselves and Protecting Our Right to Access DNA Data

A prestigious journal has an interesting article on access by individuals to his or her own genomic data. It may help fight the recent rash of news articles generating fear of DNA testing due to companies using our data for research.

Barbara J. Evans, "HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights," The American Journal of Human Genetics, Volume 102, Issue 1, 5-10; DOI: http://dx.doi.org/10.1016/j.ajhg.2017.12.004.

While the focus is on US laws and organizations, many of the general statements apply worldwide. Articles like this emphasize the importance of educating ourselves about the interpretation and meaning of DNA markers and our genes. We need to fight the perception that most of us will "make bad decisions that harm both [ourselves] and society" if we have access to our DNA data.

DNA education through teaching and writing has been my main focus in recent years. So many social media users seem to use posts as their main learning tool nowadays. It would be great if those answering questions included pointers to reputable resources where the person can learn more. Education is key to eliminating the perception that we are all dummies when it comes to DNA. Links to genetic genealogy articles and educational opportunities can be found here on my DNA bibliography which is updated as I learn of new resources.

Some key statements from the Evans article:

Although there are a range of bioethical perspectives on this question, there is a fairly broad consensus within the bioethics community that laypeople can be harmed by access to subclinical-quality genomic data.
...
A large cast of third parties potentially has access to your whole genome, while ethicists debate whether it is “information” you should have.
...
Like the right to vote, access to one’s own genomic data is a foundational civil right that empowers people to protect all their other civil rights, and HIPAA displaced states’ power to interfere with it.

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All statements made in this blog are the opinion of the post author. This blog is not sponsored by any entity other than Debbie Parker Wayne nor is it supported through free or reduced price access to items discussed unless so indicated in the blog post. Hot links to other sites are provided as a courtesy to the reader and are not an endorsement of the other entities except as clearly stated in the narrative.

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To cite this blog post: Debbie Parker Wayne, "Educating Ourselves and Protecting Our Right to Access DNA Data," Deb's Delvings, 4 January 2018 (http://debsdelvings.blogspot.com/ : accessed [date]).

© 2018, Debbie Parker Wayne, Certified Genealogist®, All Rights Reserved

Save SSDI and Stop ID Theft NOW!

How would you feel if the government restricted your access to records that name your ancestors? How far would you have progressed in your genealogical research without access to birth, death, and marriage records? What if you lost access to those and other records used to establish kinship links and our family histories? Even worse, what if your relative was unidentified and unclaimed in a coroner's office far from home and those trying to identify the deceased lost access to the very records that would allow them to find you? Or your military serviceman's body could only be identified if a living family member can be found to provide a reference DNA sample for comparison?

Several years ago a group of genealogical organizations formed an advocacy committee — RPAC — Records Preservation and Access Committee. The group has been much more visible in the last few months and is leading the charge to preserve access to records we use every day. An important blog entry on recent efforts can be found at http://www.fgs.org/rpac/2012/02/07/rpac-launches-stop-identity-theft-now-petition/. The main RPAC website is at http://www.fgs.org/rpac/.

As many genealogists now know, the U.S. House of Representatives, Ways and Means Committee, held a hearing on February 2nd to consider closing access to the Social Security Death Index (SSDI, based on the Death Master File / DMF). Only those in favor of closing the records were allowed to speak at the hearing. See http://www.ntis.gov/products/ssa-dmf.aspx for more information on the DMF and SSDI.

Many of us believe our elected officials are trying to enact legislation to make Americans feel better and safer, but that will actually have the opposite effect. Some of those violated by identity theft believe their social security numbers (SSN) were stolen from online SSDI databases. Ironically, the DMF /SSDI was created to prevent SSNs of deceased persons from being used fraudulently. And in this computerized age, how can the government justify ignoring data they spend so many of our tax dollars collecting? Legislators on both sides of the aisle are pushing to close records. But how can we allow the party that scorns government regulation to champion so many actions that regulate those who aren't able to make million dollar donations?

How can you help?

Understand the issue by reading the RPAC Talking Points on Why Genealogists Need the
Social Security Death Index (SSDI) at http://www.fgs.org/rpac/wp-content/uploads/2012/01/talking-points-on-why-genealogists-need-social-security-death-index-final.pdf.

Sign the online petition at http://wh.gov/khE. Step-by-step instructions for creating an account on whitehouse.gov and for ensuring your petition signature is counted can be found at http://fgs.org/pdf/rpac_petition.pdf.

FAX a letter to your congresspersons and senators. FAXing is better than writing; postal deliveries to the capital are delayed due to screening after anthrax-laced letters were sent via mail shortly after 9-11. Sample letter suggestions can be found at http://www.iajgs.org/pramc/Latest_Alert.doc. Legislators can often be persuaded by letters and FAXes that indicate constituents can support a bill if certain specified changes are implemented. This can sometimes be better than a bald statement that you are against a bill.

Find your senator at http://www.senate.gov/general/contact_information/senators_cfm.cfm. Most senators have their Washington, D.C., FAX number on their senate page. Often the Web page for a senator is http://_surname_.senate.gov, for example, hutchinson.senate.gov for Texas Senator Kay Bailey Hutchinson.

Find your congress-person at http://www.house.gov/. Often the Web page for a congressman is http://_surname_.house.gov, for example, gohmert.house.gov for Texas Representative Louis Gohmert.

Don't they deserve to hear from you after all the robocalls you have received from them during the dinner hour?

The DMF / SSDI is only ONE of the record sets facing restrictive access regulations. Access to social security SS-5 information and vital records in many states are under attack by those who do not understand these records are not contributing significantly to identity theft. If we enforced the laws already on the books and made proper use of the information available now, we wouldn't need "feel good" laws that sound good but don't accomplish the intended goal.

© 2012, Debbie Parker Wayne, CG, All Rights Reserved

Unexpected use of DNA

Note: Personal opinions follow.

There is a heated discussion going on right now in the genetic genealogy community. After a story was aired on a local television station, Dick Eastman's Online Genealogy Newsletter carried the story to genealogists.The discussion spilled over into the general public after CNN and London’s Daily Mail carried the story.

Police asked for assistance from a well-known forensic and genetic genealogist in analyzing a DNA sample from a 1991, King County, Washington, case where a sixteen year old girl was murdered. Some of the information, as reported, is incorrect. Other blog articles and comments in the online stories above are correcting some of those errors. No matter how carefully a knowledgeable person tries to phrase probabilities with DNA results, those explanations are difficult for the less-experienced to understand. Even if a reporter gets it right, editors make changes without truly understanding how the meaning of the words were changed, headline writers are trying to catch your attention with the most sensational phrasing. And readers can get something different than either the expert, the reporter, or the editor meant to convey.

Genealogy DNA project administrators are worried relatives will resist testing for genealogical purposes if they think their DNA results will be used by the police when the DNA tester is not remotely related to a crime.

Some see this as another incidence of government agencies trampling our rights to privacy and freedom from unwarranted search and seizure.

Here are some facts to consider:

For the most part, people making comments online have no detailed information about what was actually done — how many markers were tested, how closely did they match, exactly what was done. Without understanding these undisclosed facts of the investigation no real evaluation of the process can be made.

We don't know enough about the DNA markers used for genealogy and exactly what matches mean. Some projects have testers who match exactly on 67 or more markers when we know they don't have a common ancestor within the last several hundred years. That same project can also include testers showing two mutations likely occurred between a father and a son. One DNA project administrator reported three mutations between a father-son pair that tested.

Genealogical DNA databases are NOT representative of the population at large. DNA databases include only those who have self-selected themselves for testing.

Those self-selectors can provide any information they want about names and ancestors. Many provide no information at all. Some may have provided alias information just because they wanted to protect themselves from possible misuse of their DNA results. I'm not recommending this. If more people do this the databases will become useless for genealogical purposes. But this severely impacts any conclusions drawn by law enforcement based on self-provided, unverified data in genealogical databases.

Ever since Dolly was cloned, even before, there have been discussions about how science and technology have moved far beyond our laws. We do need to update our laws and define what is legal and what is not. Recent laws like GINA and the California SB 559 are a start. We need more. Some of us have been worried about and fighting to keep the government from restricting our right to access our own DNA test results without unnecessary regulation and interference by those who think they know better than we do. This current controversy could exacerbate the regulation situation — or make it irrelevant if no one tests anymore because they worry about the police getting their DNA data.

Why is it we never seem to be proactive in solving issues instead of panicking and being reactive? There will always be those who will violate the accepted rules, but we should document the rules to provide guidance for those who want to know what is right and what is wrong.

My personal opinion is that I have no problem with police doing any DNA tests they want on convicted felons or on someone they have REASONABLY concluded is a suspect. I am against blanket DNA testing to try to narrow down an investigation to possible suspects. I am against using medical and genealogical databases for criminal investigations. I suspect my relatives and friends who are involved with police work might disagree with me.

When and if we ever learn enough about DNA so that we can be sure the guilty person is the only one who will be caught in a net, I might change my mind. Today there are too many unknowns to put what we have learned about relationships from genealogical DNA testing to use nabbing suspected criminals.

Note: I did not include links to DNA projects or mail-lists to document my statements above. In this paranoid environment that does not seem prudent. And I'll leave it to the mathematicians to post the supporting statistics now under discussion by genetic genealogists.


Related Stories:

Does DNA Link 1991 Killing to Colonial Era Family? by Blaine Bettinger of The Genetic Genealogist offers a commmon sense way of looking at this issue. He may convince me that it is acceptable to use medical and genealogical databases for criminal investigations.

Added 12 January 2012:

Using Public Y-DNA Profiles to Track Down Criminals: Would You? by CeCe Moore of Your Genetic Genealogist asks "If one of your loved ones was murdered and you believed that you could identify the guilty party using the same resources that we use for our hobby...wouldn't you?" and offers supporting arguments.

Added 14 January 2012:

"The Mayflower criminal registry," by John Hawks of John Hawks weblog brings up issues we should discuss as affordable whole-genome research becomes a reality.


© 2012, Debbie Parker Wayne, CG, All Rights Reserved

Research, Proof Standards, and DNA Testing

As genealogists, we devote most of our reading time to genealogical and historical sources. We can forget how much we can learn from other disciplines. With the use of DNA testing in genealogy, science and medical sources are of interest even to genealogists who didn't devour Scientific American and enjoy biology class as a teenager.

On the discussion list of the International Society of Genetic Genealogists (ISOGG), Debbie Kennett, author of DNA and Social Networking: A Guide to Genealogy in the Twenty-First Century, posted about the book, Testing Treatments: Better Research for Better Health Care, second edition, by Imogen Evans, Hazel Thornton, Iain Chalmers, and Paul Glasziou (London: Pinter and Martin Ltd., 2011). The foreword of the book is written by Ben Goldacre, author of the book Bad Science (New York: Faber and Faber, 2010; several other editons and publishers also available) and his blog of the same name.

The Testing Treatments website has links for ordering the print version of the book. It includes a link allowing the full version to be downloaded as a PDF. After perusing the PDF, I expect to order the print version I can hold in my hands for a leisurely read on the sofa.

How does this relate to genealogy? Through common research processes and my interest in using DNA for genealogical purposes.

In genealogy, we often discuss the links between genealogical and historical research. This book shows similarities between all kinds of research:

• The very first sentence of the foreword includes a question that is critical to genealogical research as well as the subject of the book and any other kind of research:
  

  Medicine shouldn't be about authority, and the most important question anyone can ask on any claim is simple: ‘how do you know?’
  

• Throughout the book there are discussions of systematic review and looking at the totality of evidence.
  
• Discussion of assessing all the relevant, reliable evidence (emphasis added) begins on page 94.
  
• Discussion on how to recognize "vested interests and spin in systematic reviews" begins on page 98.
  

The medical research proof standard is a lot like the GPS as defined in Genealogical Proof Standard: Building a Solid Case, 3rd edition revised, by Christine Rose (San Jose, California: CR Publications, 2009):

• "a reasonably exhaustive search for all information that is or may be pertinent to the identity, relationship, event, or situation in question"
  
• where we provide "a complete, accurate citation to the source or sources of each item of information"
  
• then "analyze and correlate the collected information to assess its quality as evidence"
  
• resolve conflicts
  
• and "arrive at a soundly reasoned, coherently written conclusion."
  

I was first drawn to Testing Treatments so I could better understand the position of the medical community as it relates to Direct To Consumer (DTC) DNA testing. I am adamant about preserving the right to access my genetic data without going through a gatekeeper specified by government regulation. Along with other ISOGG members, I'm keeping an eye on what the international, U.S., and state legislatures and parliaments are doing as far as hearings and legislation related to DNA testing. I don't want ancestral DNA testing getting caught up in the same kind of legislation that is leading to many states closing access to vital records because they have erroneously been convinced it is a main cause of identity theft.

The portions of chapter four related to genetic tests offer some sensible cautions. We don't yet fully understand all of the interactions between our genes and our environment. But if we don't do DNA testing and analysis we won't ever understand those interactions. Maybe knowledge of genetic predispositions would make some people more fearful. I would suggest that person shouldn't have the test done. But I don't think I should be restricted from spending my own money on a test of my choosing because some other person "might" not take the time to learn what the test results may or may not mean with the knowledge we have. So many people today tout how the free market can cure all the economic ills of the world and all government regulations should be abolished. While I don't agree with that sentiment, I also don't think unnecessarily restrictive regulations should be enacted. We need to find the middle ground this country used to be proud of—striking a balance as discussed on page 48 of Testing Treatments—enough regulation to keep charlatans from abusing the uninformed public without restricting the rights of informed parties to as much information as they wish about their own bodies and genetic makeup.

In addition to seeing the similarities in genealogical, medical, and other kinds of research, I learned a lot from Testing Treatments about medicine and modern pharmaceuticals that will help me make better decisions as I am inevitably confronted by problems of aging. This book is worth your time reading for many reasons.

© 2011, Debbie Parker Wayne, All Rights Reserved

U.S. FDA Hearings on Direct to Consumer DNA Tests

Last summer the U.S. House of Representatives Committee on Energy and Commerce, chaired by Henry Waxman, held hearings on Direct to Consumer (DTC) Genetic Testing. Many bloggers posted about the meetings and their opinions on the availability of DTC tests, including those we use for determining ancestry using DNA. Last week in San Fransisco the FDA held a town hall on the same topic. The DTC Watch blog includes the full text of the speech made at this meeting by Glenn Hammonds:

http://dtcwatch.blogspot.com/2011/09/glenn-hammonds-speech-at-san-francisco.html

There are sure to be more blog postings on this and future hearings soon. We all need to keep up with government activities related to DTC genomic testing and be ready to contact our congressmen and senators to let them know how we feel. Last summer I contacted all of the congressional representatives on Rep. Waxman's committee to let them know, among other things:

In a free society each person has an absolute right to information about her own genome from a source of her own choosing. Please help preserve our individual right to this information by avoiding any unnecessary regulation.

Do you know who your state and national representatives are and how to submit your opinions to them? If not, look it up and keep the information handy. After all, they are supposed to be public servants, serving the people, not serving their own interest or the interests of the richest lobby. When notice of a hearing or a bill comes up that might affect DTC genomic testing, be ready to let your elected representatives know how you feel. For those of us who have in the past and who will in the future break through a genealogical brick wall using DNA tests, the right to our own genetic data is important.

© 2011, Debbie Parker Wayne, All Rights Reserved