Between the panel and additional conversations, I was shocked and nauseated to hear the British POV on infanticide. My environment. My culture. My religion. Are all against infanticide.
Friday, May 10, 2019
Opinion: The Great Divide on Infanticide
Between the panel and additional conversations, I was shocked and nauseated to hear the British POV on infanticide. My environment. My culture. My religion. Are all against infanticide.
Tuesday, November 28, 2017
Seventeen years and millions tested ought to count for something Sen. Schumer
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.
Sunday, June 7, 2015
Semper necessitas probandi incumbit ei qui agit
"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."
"Why are so many genealogists jumping on Kyle’s bandwagon without questioning what he is saying?"
"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."
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.
"What happened to our Genealogical Proof Standards?"
Wednesday, December 11, 2013
Bad research vs. the truths behind the 23andMe stories
Director, International Society of Genetic Genealogy
Wednesday, September 28, 2011
Glenn Hammonds' speech at the San Francisco FDA Town Hall Meeting
Glenn Hammonds was the only DTC speaker at the FDA Town Hall meeting in San Francisco, California on 22 September 2011. Here is his speech published in its entirety:
Good morning everyone. My name is Glenn Hammonds, I'm a native of Nashville, Tennessee, but I've lived in the San Francisco Bay Area since 1979, and in Oakland since 1987. It is a pleasure to be back in South San Francisco where I spent many years as a scientist at Genentech and Exelixis.
I'd like to thank CDRH Director Shuren and his staff for arranging this meeting, and for giving me the opportunity to speak on the subject of Direct To Consumer Genomics.
I am concerned, as a consumer, as a scientist, and as a citizen, at the prospect of elimination of direct to consumer testing.
As a satisfied customer of 23andMe, I would be appalled to lose access to their services, which I have enjoyed for several years, and which I have recommended to friends and family. I've also used FTDNA, and am satisfied with their testing, although I don't understand why they have to remove perfectly good data from their reports before releasing it to me.
As a scientist who's spent a good deal of time in biotech and pharma, I think it likely that restricting access to these inexpensive and powerful tests could well slow discovery and innovation. I was impressed by the list given by Don Vorhaus of the Genomic Law Report web site detailing why this might happen, including the following factors.
Reduced access to capital.
Fewer new products
Fewer entrants into the field
Increased risk of Litigation.
Reduced access to technology.
Encouraging overseas development.
As you know, students in graduate and medical school today are using DTC genomic data sets, often their own, to learn genomics in a way profoundly different from any previous generation. Some of this work is already available on line, for example the Integrome project from Stanford. Genomics will continue to transform medicine and biology for a long time. These students are the vanguard of a fully genomic aware cadre of scientists and physicians. Don't stunt their growth!
Finally, as a citizen of a nation that values personal freedom and responsibility, I know that a person is not a just a patient, a consumer of medical devices, drugs, and advice. A person's genome is the starting point for all that a person is, and contains information about the whole person. Restricting access to information and advice about that most important part of personhood itself is abhorrent, and cannot stand.
I'd like to close with a selection of opinions from other customers of 23andMe, sent to me after I made a public appeal through the web site.
"It is important that you express the unhappiness - anger if you will - that has arisen among many who feel that any attempt to regulate DTC is unnecessary and unwelcome."
"In my personal experience, I took my 23andMe results to my physician and after I explained them to him he agreed to add them to my medical record."
"The medical profession and individual citizens need education, as much education as we can can help them get, about the coming era of personal genomic medicine. Restricting the information that can be learned from DNA testing from individual consumers does not promote better medical care."
"I don't find the health and trait information on this site compelling and am much more interested in genealogy and ancestry, but I can't support the restriction of information to any user whatever their interest."
"I do NOT want the government to filter my access to information about my own genome."
"The only other way I want the government involved is to ensure that insurance companies cannot use such information to deny me coverage, and that employers can't use it to not hire me"
Monday, September 28, 2009
ANALYSIS - "Direct-to-consumer genetic tests: beyond medical regulation?" D. Magnus, et al.
A "Commentary" paper that leads off with an abstract stating DTC test analysis is "uncertain because of the lack of information about environmental and other factors, and because for the vast majority of genetic loci the associations with disease are weak". This assessment is based on only one paper reference.
The introduction of the paper provides a brief description of DTC tests and asks if tests should be regulated. The Discussion section covers the current federal and state regulatory framework for genetic tests already in place including the 2008 California Dept. of Public Health's "cease and desist" letters.
The authors' opinion that the DTC companies arguments for offering tests directly to the public are "weak to indefensible" citing that while "People may indeed have a right to their genetic information, but it does not follow that we should not regulate the process to make sure that information is appropriately provided." They summarize that the second argument for public DTC is that the tests are "not really medical" and the third argument is "that patients deserve direct access to their health information without a physician intermediary." The authors state that "A physician working for a company selling tests is clearly not well situated to look after a patient's best interest".
The authors stretch to support this argument with, "To make matters more confusing, personal genomics could predict risks of very weak genetic associations while leaving out powerful predictive mutations" like in a rare form of breast cancer. But then the straw-man is revealed in their caveat, "But these are not tests offered through personal genomics services."
The authors then postulate that "California and New York states are right to create standards to protect their citizens from the risks of medical testing" which first of all, California did not create a "standard"; the California Dept. of Public Health arbitrarily sent "cease and desist" letters based on anonymous "letters of complaint". New York's law dates from 1996, and can hardly be suggested as standards created for the DTC-era since the law pre-dates it.
The authors acknowledge that physicians will need training. What the authors do not mention is what kind of impact such training will have upon the industry such as: will all physicians require training? Who will pay for the training? How long will such training take and will the DTC companies still be allowed to sell tests during this time frame? These and many more questions need answering before any legislation or standards are imposed.
Tuesday, September 8, 2009
UK - The Human Genetics Commission Principles and Consultation Questions
The purpose of the document:
"promote high standards and consistency in the provision of direct-to-consumer genetic tests amongst commercial providers at an international level in order to protect the interests of people seeking genetic tests and their families. They will identify where individual companies and or national jurisdictions should have defined measures in place and the nature of those measures. " - pg 1
"The HGC is not a regulatory body. It hopes that these Principles will lead to the development of codes of practice that take account of existing regulatory structures where the need for additional regulation or legislation is revealed to be necessary."
"Other tests can also provoke anxieties, such as ancestry tests that offer fundamental information about identity and ethnicity."