LEHI If given a chance, who wouldnt want to spend a few bucks to find out if theyre at heightened risk for one day having to confront some life-changing or life-ending medical malady?
Thats the concept fueling an explosion in direct-to-consumer genetic testing and one thats also elevating ethical debates about how this most personal of information should be interpreted and protected.
Utah-born Ancestry.com is the latest entry into a growing list of companies offering health-focused genetic testing an industry expected to grow to $20 billion annually in the next few years.
While best known and an industry leader for its expertise in providing answers to the Where am I from? question, Ancestry will now expand its genetic testing resources to help people anticipate future health issues and help address, Whats going to make me sick?
Last week, the company that launched more than 30 years ago as a family history search service, later adding DNA testing to help customers identify their geographic ancestral roots, announced its new, health-focused genetic testing service.
AncestryHealth will offer two levels of genetic testing that the company said will deliver actionable insights that can empower people to take proactive steps in collaboration with their health care provider to address potential health risks identified in their genes and family health history.
Ancestry CEO Margo Georgiadis said the new genetic tests will help clients proactively manage their health care needs, armed with new insight on what conditions they may be predisposed for, based on genetic evidence.
Your genes dont need to be your destiny, Georgiadis said in a statement. Understanding your familial and inherited health risks can help you take action with your doctor to improve your chances of better health outcomes.
For more than three decades, Ancestry has empowered journeys of personal discovery to enrich lives. In the same way that knowledge of your family and ethnicity helps you understand your past to inspire your future, knowledge of your genetic health profile and any associated risks can help you be proactive in managing the future for you and your family.
The two testing products, according to the company, include AncestryHealth Core, which uses the companys current genotype genetic assessment technique to detect genetic differences and deliver personalized reports related to health conditions such as heart disease, hereditary cancers, blood-related disorders, and risks for carrier status of health conditions, such as Tay-Sachs disease. The one-time test costs $149 and also includes the companys family history report. Those who have already submitted a biologic sample to the company can get the new genetic report for $49.
While likely not available until sometime in 2020, the AncestryHealth Plus will use more current, genetic sequencing technology that will provide greater coverage of DNA differences for each condition and more risk categories such as those related to potentially developing heart disease, cancers, and disorders related to blood, the nervous system and connective tissues. The sequencing test will require a $199 activation fee, which the company said includes the first six months of membership and an additional $49 membership fee every six months. Existing Ancestry customers will be able to upgrade to AncestryHealth Plus for an initial payment of $49.
Ancestrys testing regimen will assess genetic samples and indicate predispositions for high cholesterol and cardiomyopathy, which can lead to heart disease; hereditary indicators for breast, ovarian, colon and uterine cancers; and blood disorders including abnormal clotting and iron overload. The testing can also determine if the sample donor is a gene carrier for cystic fibrosis, sickle-cell anemia or Tay-Sachs disease, a fatal nervous system disorder that most commonly occurs in children.
Unlike its competitor, 23andMe, which has earned U.S. Food and Drug Administration approval for providing genetic test results directly to customers without a physicians participation, Ancestrys genetic testing service requires a physicians order to conduct the tests and the company says it has contracted with a private network of independent physicians and genetic counselors who participate in the process. Ancestrys health testing service also connects customers to educational information, including access to genetic counseling resources and provides printable and consumer and physician-ready reports that provide guidance for next steps an individual and their health care provider can take together.
Lynn Jorde, chairman of the University of Utahs Department of Human Genetics and executive director of the Utah Genome Project, said while labs are now capable of sequencing the entirety of the human genome some 3 billion genetic basis pairs the microarray technique currently used by Ancestry evaluates a small window of genes that, if a variation is found, have a viable medical response.
What theyre looking at is specific changes in the DNA that we know about in specific instances ... and are often called actionable genes, Jorde explained. If you have a disease causing variant here, there is actually something we can do about it.
Jorde said while some genetic markers, like those for cystic fibrosis, indicate a high probability that you have or will develop that condition, many more are merely suggestive.
The predictive power of genetic testing is getting better and better, but it will never be perfect, Jorde said. For many of these conditions, there are nongenetic components that impact risk.
Jorde said things like environment, diet and exercise/activity level can play a significant role in an individuals risk of developing an illness or disease.
Teneille Brown is a professor at the University of Utahs S.J. Quinney College of Law and an expert in health law and medical ethics. In an interview, she noted direct-to-consumer genetic testing services, now being offered by dozens of companies according to the National Institute of Health, are occupying a space thats in between current regulatory boundaries aimed at protecting individuals privacy rights.
In the research realm, any federally funded projects are subject to stringent privacy rules, Brown said. That is also the case for health care institutions that handle genetic material, under (Health Insurance Portability and Accountability Act) rules.
But the big databases being built by testing companies are outside of the federal funding process and are not health care providers, so the HIPAA rules dont apply, Brown said.
Ancestry appears to underscore this by noting, in its user agreement, that it is not a covered entity under HIPAA rules.
Brown noted that in addition to unanswered questions about privacy protections, genetic test results can lead to deep emotional impacts for tested individuals, either through the discovery of gene markers that are suggestive of some future medical challenge or, less obviously, when a clean test is returned, which may provide an inaccurate suggestion that theres nothing to worry about.
Theres a huge problem when it comes to understanding what these risk scores mean, Brown said. The predictive values of these results is widely variable, including what is, or is not, implied by failure to find a specific marker.
Brown said genetic testing companies have wide-ranging policies regarding sharing an individuals genetic test results or stored biologic samples with third-party researchers. Ancestry, for example, says it will only share your information if youve given them specific permission to do so, through its informed consent agreement.
While the regulatory world is lagging behind the fast-moving development of genetic testing technology, Brown said she believes the bigger companies, including Ancestry, are working to create appropriate protections for their customers. And, she added, the growing body of knowledge being accumulated by this work could lead to groundbreaking advancements in treatments for serious diseases.
These companies might play a role in developing amazing drugs and therapies, Brown said. Collectively, they are adding all of this amazing content, providing pedigrees and information and incredibly powerful databases ... and a lot of good can come of it.
Its not at all sinister, but we need consumers to know what theyre submitting and being diligent about potential secondary uses of that data. More robust consent requirements for users and strict limitations for secondary uses are certainly in order.
- Who is a Jew? DNA home testing adds new wrinkle to age-old debate - The Jewish News of Northern California - December 1st, 2019
- Humans and autoimmune diseases continue to evolve together - Medical News Today - December 1st, 2019
- Mutations in emerging autism gene tied to distinct traits - Spectrum - December 1st, 2019
- Gail Fisher's 'Dog Tracks': Spoiling you dog with extra food could cut short its life - The Union Leader - December 1st, 2019
- In a Wisconsin village, the doctor makes house calls and sees the rarest diseases on Earth - USA TODAY - December 1st, 2019
- Alzheimer's and Autism: Researchers Pinpoint Genetic Mutations Overlapping in Both Diseases - Being Patient - December 1st, 2019
- How do consumer DNA tests from the US and China stack up? - Abacus - December 1st, 2019
- I Took DNA Tests in the U.S. and China. The Results Concern Me - BloombergQuint - December 1st, 2019
- Is Nature vs. Nurture an Outdated Concept? - The National Interest Online - December 1st, 2019
- Collection of genetic data leads to privacy concerns - The New Economy - December 1st, 2019
- Is sexual orientation genetic? Yes and no, an extensive study finds - Haaretz - November 19th, 2019
- People in the News: Jessica Mega, Pardis Sabeti, Thomas Caskey, Robert Ford, Miles White, More - GenomeWeb - November 19th, 2019
- Sexual orientation cannot be changed at will, lawyers argue - The Straits Times - November 19th, 2019
- Adam and Eve Are Possible: A Second Bite at the Genetic Apple - Christianheadlines.com - November 19th, 2019
- InterVenn Biosciences Announces Positive Interim Clinical Trial Results and Appoints Biotech Veteran Klaus Lindpaintner, M.D. as Chief Scientific and... - November 19th, 2019
- How maternal Zika infection results in newborn microcephaly - Baylor College of Medicine News - November 19th, 2019
- Dicerna scores broad, 'rest of liver' deal with Novo Nordisk, bagging $225M in cash to hit some 30 targets with RNAi platform - Endpoints News - November 19th, 2019
- Sexual orientation cannot be wilfully changed, say lawyers fighting to repeal Section 377A - The Straits Times - November 19th, 2019
- The American Heart Association's Annual Conference Comes to Philly This Weekend - Philadelphia magazine - November 19th, 2019
- Clear link between genetics and depressive symptoms uncovered - The Age - November 19th, 2019
- At-Home DNA Tests Still Need the 'Human Touch,' Say Panelists at Genomics Roundtable Workshop - National Academies of Sciences, Engineering, and... - November 19th, 2019
- How in utero Zika virus infection can lead to microcephaly in newborns: Baylor research - Outbreak News Today - November 19th, 2019
- Taller People have Increased Risk of Irregular Heartbeat - News18 - November 19th, 2019
- In Down syndrome mouse model, scientists reverse intellectual deficits with drugs - University of California - November 19th, 2019
- Alector Reports Recent Business Highlights and Third Quarter 2019 Financial Results - GlobeNewswire - November 19th, 2019
- One of the World's Greatest Geneticists, He Gave Up British Citizenship for India - The Better India - November 19th, 2019
- Section 377A constitutional challenge: Expert evidence reveal sexual orientation cannot be changed at will, lawyers argue - The Online Citizen - November 19th, 2019
- Co-creator of CRISPR lectures about future applications of genome editing technology - Daily Bruin - November 19th, 2019
- Connecting gene mutations, rare genetic diseases - Baylor College of Medicine News - October 28th, 2019
- Study pinpoints rare genetic change that may boost risk of warts in throat - News - The Rockefeller University Newswire - October 28th, 2019
- Utah researchers discover link between certain brain cells and anxiety, OCD - KSL.com - October 28th, 2019
- UH Receives $2M to Study Cancer Risks of Environmental Toxins - Big Island Now - October 28th, 2019
- Student group works to foster diversity in the sciences - UChicago News - October 28th, 2019
- Takeaways from ASHG 2019 in Houston: Users of Bionano's Saphyr System Presented Validation Results for FSHD, Repeat Expansion Disorders and Digital... - October 28th, 2019
- The promise and peril of the new science of social genomics - Nature.com - October 28th, 2019
- DNA research holds the keys to human history but it's being weaponized by politicians - Haaretz - October 28th, 2019
- Using iPSC Techniques to Study Genetics, Mechanisms & Treatments of Neurodegenerative Disorders - News-Medical.net - October 28th, 2019
- Scientists have created the first-ever 18-carbon ring, a major feat of molecular architecture - Massive Science - October 28th, 2019
- Law, Privacy and Genome Human Rights Failure in Russia - Putin's Fascination with Hitler's Eugenics Project - Communal News - October 28th, 2019
- Neural activity plays an important role in longevity - CMU The Tartan Online - October 28th, 2019
- Book Summary: Genetics and the Aryan Debate by Shrikant Talageri- I - IndiaFacts - October 28th, 2019
- atheism | Definition, Philosophy, & Comparison to ... - May 28th, 2019
- Atheism | CARM.org - May 28th, 2019
- Atheism - Simple English Wikipedia, the free encyclopedia - May 28th, 2019
- atheism r/atheism - reddit: the front page of the internet - May 28th, 2019
- Cryptocurrency News: This Week on Bitfinex, Tether, Coinbase, & More - May 25th, 2019
- Ripple Price Forecast: XRP vs SWIFT, SEC Updates, and More - May 25th, 2019
- Cryptocurrency News: Bitcoin ETFs, Andreessen Horowitz, and Contradictions in Crypto - May 25th, 2019
- Cryptocurrency News: Looking Past the Bithumb Crypto Hack - May 25th, 2019
- Cryptocurrency News: XRP Validators, Malta, and Practical Tokens - May 25th, 2019
- Cryptocurrency News: Bitcoin ETF Rejection, AMD Microchip Sales, and Hedge Funds - May 25th, 2019
- Cryptocurrency News: What You Need to Know This Week - May 25th, 2019
- Bitcoin Rise: Is the Recent Bitcoin Price Surge a Sign of Things to Come or Another Misdirection? - May 25th, 2019
- Cryptocurrency News: Vitalik Buterin Doesn’t Care About Bitcoin ETFs - May 25th, 2019
- Cryptocurrency News: New Exchanges Could Boost Crypto Liquidity - May 25th, 2019
- Human genetics - Wikipedia - May 5th, 2019
- Human genetics - Wikipedia - May 5th, 2019
- Human Genetics - medschool.ucla.edu - May 5th, 2019
- Department of Human Genetics | The University of Chicago - May 5th, 2019
- Human genetics - Wikipedia - May 2nd, 2019
- Human genetics | biology | Britannica.com - May 2nd, 2019
- Department of Human Genetics | The University of Chicago - May 2nd, 2019
- What is Bitcoin Cash? - finance.yahoo.com - April 29th, 2019
- Bitcoin Cash (BCH) Price, historic Charts and detailed Metrics - April 29th, 2019
- Bitcoin Cash (BCH) price, charts, market cap, and other ... - April 29th, 2019
- Bitcoin Soars As Ethereum, Ripple's XRP, Bitcoin Cash, And ... - April 29th, 2019
- Bitcoin Cash - finance.yahoo.com - April 29th, 2019
- What is Bitcoin Cash? - Coin Rivet - April 29th, 2019
- Moon Cash | Free bitcoin cash faucet - April 29th, 2019
- Cash App - Bitcoin - April 29th, 2019
- Bitcoin Cash (BCH) price, chart, and fundamentals info ... - April 29th, 2019
- Bitcoin Cash - Wikipedia - April 29th, 2019
- Bitcoincash price | index, chart and news | WorldCoinIndex - April 29th, 2019
- Bitcoin Cash (BCH) Price, View BCH Live Value & Buy Bitcoin ... - April 29th, 2019
- Ripple Price Forecast: XRP vs SWIFT, SEC Updates, and More - April 21st, 2019
- Cryptocurrency News: Looking Past the Bithumb Crypto Hack - April 21st, 2019
- Cryptocurrency News: This Week on Bitfinex, Tether, Coinbase, & More - April 21st, 2019
- Cryptocurrency News: XRP Validators, Malta, and Practical Tokens - April 21st, 2019
- Cryptocurrency News: Bitcoin ETFs, Andreessen Horowitz, and Contradictions in Crypto - April 21st, 2019
- Cryptocurrency News: New Exchanges Could Boost Crypto Liquidity - April 21st, 2019