Seventeen years and millions tested ought to count for something Sen. Schumer

Here we go again. A new day. A new person. Another federal entity being called upon to save us from ourselves. 

Sen. Chuck Schumer of New York announced at a press conference on the Sunday before Cyber Monday 2017, plans to investigate the terms of service agreements of ancestral DNA testing companies. In Senator calls for more scrutiny of home DNA test industry, Schumer is quoted, 

"...some of their terms-of-service agreements weren't clear on just what companies could do with your genetic information."

The senator is asking the Federal Trade Commission to:

"...take a serious look at this relatively new kind of service and ensure that these companies can have clear, fair privacy policies."

The direct-to-consumer ancestral DNA testing industry started in the year 2000 so can hardly be called "relatively new". 

With respect to the DNA companies' "clear, fair privacy policies", there's always room for improvement. That said, the DNA companies named in the article have worked very hard and invested quite a bit to insure "clear, fair privacy policies."  AncestryDNA is a prime example. Their privacy policy is clear, concise, and updated on a regular basis with past versions available. AncestryDNA even provides a version for US citizens as well as international.

Launched in 2007, 23andMe has also heavily invested in their Terms of Service (ToS) and Privacy Policy. Both the ToS and privacy policy even contain a glossary. How much more clearer can they be? Schumer additionally said, 

"Here's what many consumers don't realize, that their sensitive information can end up in the hands of unknown third-party companies," he said. "There are no prohibitions, and many companies say that they can still sell your information to other companies."

23andMe explicitly states they DO NOT provide any information to a third party without express permission under "Consent to the Transfer of your Personal Information" under number 2. on their privacy policy:

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent."

Much of the fault in consumers not realizing what they're consenting to, lies not in ignorance or illiteracy, but in laziness. A 2016 episode on NPR shared that 98% of those who participated in the study missed a clause agreeing to give up their first-born child. Consumers need to be proactive and educate themselves by reading the ToS and privacy policies.Towards the end of the article, Schumer again states the DTC DNA companies are

"...brand new, and they need safeguards."

Ancestry has been in the DNA market since 2006. 23andMe since 2007 and MyHeritage is a reseller of a test from a company founded in 2000. Again, not "brand new". 

Consumers have a right to their genetic information just as much as we have the right to medical information as allowed under HIPAA law. Let Sen. Schumer know. Help educate him. Contact.

Semper necessitas probandi incumbit ei qui agit

Or translated in English to "the necessity of proof always lies with the person who lays charges". An apropo maxim for Colleen Fitzpatrick's latest attempt to discredit Benjaman Kyle (She was previously interviewed on a news segment). Ms. Fitzpatrick opens by asking in the title of her June 2, 2015 Indentifinders blog post, "Has the Genetic Genealogy community lost its GPS?" with "GPS" referring to "Genealogical Proof Standard". She charges that the genetic genealogy community has a "blatant disregard" for the Genealogical Proof Standard.

After quoting comments made by others in support of Mr. Kyle, Ms. Fitzpatrick accuses those supporters as embracing his "statements as true without review".

Ms. Fitzpatrick then proceeds to diagnose Mr. Kyle with a "mental problem" or "psychological condition": 

"If Mr. Kyle is an amnesiac, he has a mental problem. If he is only pretending to be an amnesiac, he has a psychological condition." 

And it should be noted that while Ms. Fitzpatrick lists on LinkedIn that she holds a PhD in physics from Duke University, she is not an MD, nor PhD trained in psychology, nor even a Licensed Clinical Social Worker to make any diagnoses or determination on the state of Mr. Kyle's condition. Even so, she uses her diagnoses as a basis for saying, 

"Why are so many genealogists jumping on Kyle’s bandwagon without questioning what he is saying?"

In what is perhaps, the most dumbfounding part of her diatribe, Ms. Fitzpatrick then writes:

"The wise genealogist should insist Mr. Kyle produce the name of the law firm he alleges I hired. A wise genealogist should also request a copy of the letter I supposedly sent to DNA volunteers to deter them from working on his case.
Kyle has not produced either of these items, nor have any DNA volunteers come forward claiming to have received such a letter."

because the utter folly in mentioning this is that it actually exists and has been produced! Its posted here with the permission of the recipient:

This letter was transcribed and posted to the Indentifinders blog comments section but its been sitting in moderation since June 3, 2015.

The next part of the blog post delves into the denial of service attack and blocked access to Mr. Kyle's DNA accounts. These are things that the DNA companies have records on and can be verified by them for Mr. Kyle, and any involved law enforcement and/or legal representation. 

Ms. Fitzpatrick closes her blog piece by questioning Mr. Kyle's character with "An individual’s DNA does not provide insight into his character" and insinuating that he may have had a nefarious past in the mafia, drug cartel, child molester or dodging child support. And that because people believe what he's saying that genetic genealogists are nothing more than a "...rabid crowd, cannibalized by their starvation for excitement". She closes with,

"What happened to our Genealogical Proof Standards?"

That last line may be the most valid statement made in the article by Ms. Fitzpatrick! What happens when GPS lists "evidence [that] is direct and virtually impregnable" like producing a legal letter? Are there any ramifications if a member of the Association of Professional Genealogists uses a blog to carry out a character assassination on a former client? 

Indeed, what has happened to proof and standards?

Bad research vs. the truths behind the 23andMe stories

By Katherine Borges
Director, International Society of Genetic Genealogy

You'd have to be living in a cave to not know about the media storm that's befallen 23andMe over the past several weeks. With one damning media story cranked out after another, its hard to imagine the old adage about "There's no such thing as bad publicity" proving true for 23andMe. Its like the old game of telephone gone horribly awry. In one example, the FDA desist letter was picked up by Swedish and Finnish media outlets with the claim that the 23andMe test will, "...lead women [to] unnecessarily operates off their chest after notification that they have an increased risk of breast cancer."

Another person asked if lungs were "taken away if there was the risk of lung cancer?"

While parts of the stories may be subject to being "lost in translation" overseas, the situation with how much research journalists are conducting on their stories isn't any better in the U.S. The article, "Would you like to share your DNA code today?" by Barbara Shelly of the Kansas City Star is a prime example. Ms. Shelly reused an Associated Press quote from the attorney for a class action law suit filed against 23andMe last week. But if she had thoroughly researched her story instead of just jumping on the latest witchhunt bandwagon, then she would have been the first to conduct REAL journalism by fleshing out the truth in the stories.

For instance, would Ms. Shelly, or even the Associated Press for that matter, still have used the quote from the plaintiff's attorney if they knew that the plaintiff was the wife of one of her attorney's law firm partners?  Or that the plaintiff ordered her test in September and received her results on November 19, just three days before the FDA letter went public? Or that the plaintiff's husband's law firm specializes in class action law suits? Knowing these facts, how much weight does the attorney's quote carry? How much time did the attorney put into researching 23andMe before making the assertion that their database building is "thinly disguised". Frankly, its not disguised at all, the company has been quite open about building a large database.  Would Ms. Shelly and AP still have used the quote if they knew all of this?

Another aspect that Ms. Shelly took the easy way out on is that she makes the assumption that, "...genetic testing company selling one's DNA code the way an online retailer sells email addresses..." and labeled it "creepy."  If Ms. Shelly had done her homework by either ordering a test herself or interviewing someone who had tested, then she'd know that the people who order the test agree to a consent form that rivals iTunes' consent form. She would have also learned that 23andMe customers knowingly fill out health questionnaires for the purpose of advancing medical research via using large datasets of DNA combined with health information. That is, afterall, why the company was founded. Furthermore, adequate research of 23andMe's website would have also revealed that unlike retailers who sell personal and identifying information, 23andMe's consent form explicitly states no information is shared without a person's consent and the information is aggregated and stripped of identifying info.

Ms. Shelly further demonstrates her ignorance of the genetics field with scaremongering statements like, "What if a potential employer learns someone has a high risk of an expensive disease, such as diabetes?" If she knew anything of the field or once again, had researched the topic before making such an outrageous remark, she would know that thanks to a federal law known as the Genetic Information and Non-Discrimination Act signed into law in 2008, that it would be illegal for an employer to use such genetic information against an employee.

As for the rest of her article, at least Ms. Shelly acknowledges that the medical field is already utilizing personalized genetic information. But then she shows her lack of research skills yet again by not citing the contributions that 23andMe has made. She casts those aside with a flippant, "There is a vast gulf between the quickie commercialized service offered by 23andMe and the groundbreaking medicine practiced by Kingsmore." 

Ms. Shelly, you owe 23andMe an apology and a retraction. In the meantime, perhaps the public can "weed out the bad" reporting and the FDA will soon allow 23andMe's "good work to thrive".