The Two Edges of Genetics Privacy
All of us have different levels of concern about our privacy, and genetics is a new space that many are not familiar with. You should be aware that there are potential risks before buying a DNA file, or turning over a DNA file and personal information to a company, even ours - Food Genes and Me. Our company aims to be a model for protecting one’s genetic privacy.
The better good of humanity
In our view, contributing your DNA for research to improve health is somewhat a personal duty. When you take a drug or receive medical care, you benefit from not only the work of scientists and billions of dollars of investment, but the sacrifice of many participants who took a chance on an experimental drug or food therapy. Analysis of genetic and health data can undoubtedly lead to more drugs with more focused targeting, and better health care for all. Why not share your DNA file with trusted organizations for the better good of all? Food Genes and Me CEO, Martin Schiller has written more on this subject in an article in The Conversation.
Laws that protect you
Current laws that provide some protections for genetic privacy are the Genetic Information Nondiscrimination Act, Health Insurance Portability and Accountability Act, and Affordable Care Act, although they are not designed for this purpose. In 1996 the Health Insurance Portability and Accountability Act (HIPAA) was passed. This law prevents distribution of your medical information without your written approval, and covers past and present medical care. The Genetic Information Nondiscrimination Act (GINA) passed in 2008 prevents discrimination based on genetic information covering health insurance and employment decisions (note, however, that life insurance is not included here). Genetic testing cannot be a requirement. The Patient Protection and Affordable Care Act (PPACA) passed in 2010 prohibits health insurers from discriminating against patients with genetic diseases by refusing coverage because of pre-existing conditions. Insurers may only vary premiums based on a few specified factors such as age or geographic area.
At this point, it is clear that the laws are lagging well behind. However, Senators Mike Enzi and Elizabeth Warren have proposed a new Genetic Research Privacy Protection Act – see pdf file.
Gaps in protection
The laws covering genetic privacy are indeed likely not broad enough. You do have some protection, so let’s discuss the gaps where you are vulnerable. Under existing law there are potential holes with no protections for:
- Employees working for companies with fewer than 15 employees
- U.S. military
- Military Health Insurance
- Veterans Health Administration
- Federal Employees Benefit Program
- Long term care insurance
- Life Insurance
- Disability Insurance
- Previously diagnosed conditions
Furthermore, just because there is a law, not everyone follows it. Moreover, enforcement as always is an issue, and the legal system is just starting to see cases regarding genetic privacy.
When you voluntarily give your DNA to a company, or a biological sample such as saliva or blood where your DNA is determined, you should be informed. Your data is prone to any hacking, sale of the company or changes in their privacy policy, and may be used for criminal investigation. Some companies sell your DNA, which is stated in their privacy policies – not ours here at Food Genes and Me. Drug companies are starting to purchase DNA files from big genetic companies to use in their drug development pipeline – see example. For more on privacy see recent articles by CNBC and EPIC, a vendor licensing its electronic medical record system.
DNA is also considered the new “fingerprint”. The FBI investigates crime with the national DNA database known as the Combined DNA Indexing System ("CODIS"), and a serial killer was recently caught in Sacramento, CA based on consumer DNA files.
The government will have to revise the laws and improve protection over time as the genetics sector develops over the next decade.
Another reason for concern is that, if someone wants your DNA, they can physically get it! How can they get it? The answer is “Touch DNA”.
Touch DNA. When you or a biofluid from your body touches an object, you leave behind hundreds of cells. These cells, of course, carry your DNA. Each object has a library of touch DNA from people who touched it, and DNA can last for years. Think about where you have left your DNA today: your bedding, your bedroom floor, your door knobs, toilet drain, toilet, cup, toothbrush, hairbrush, eyeglasses, clothing, etc. And, you have not even left your bedroom area yet. You get the point, and this does not even consider the public domain after you leave your house. When your DNA is discarded on any items in your trash, goes down the drain, or is left in a public place like a car door handle, your privacy is in jeopordy. Even if someone does not know you and you have touched an object, and swipes it, your DNA can be matched to DNA databases such as 23andMe, Ancestry, GEDMatch, or the FBI’s CODIS and help identify you through close-relative matches. This investigation strategy hit the news this year to catch a serial killer, closing a cold case. Thus, keep in mind that DNA could be used to compromise your privacy. Even if there are not a lot of laws to protect us, we can do things to protect ourselves, such as working with companies that will not re-sell your DNA and being armed with the above knowledge on touch DNA.
Shared privacy of your relatives
Your DNA codes the information inherited from your parents, their parents, and so forth. You actually share half your DNA with your parents, siblings, and children. Even a third cousin, twice removed has 8000 genetic variants in common! The Lazarus tool on GedMatch, a site for investigating your ancestry, can examine the DNA of close relatives to fairly accurately infer all or part of the DNA of a deceased or other relative! A recent Research study demonstrates that you and your relatives can likely be identified from your DNA, thus showing another route, which could be used to compromise your privacy.
The decisions you make may impact the privacy of others, and vice-versa! This is true even for a distant relative. Let me give you an scary example. You don’t examine your DNA, but your grandfather and daughter do. Grandpa is found to have a variant that puts him at a high risk for Alzheimer’s disease. A long term care insurer gets this information (from touch DNA) and denies an insurance application to cover your child for long-term care. To my knowledge, a case like this has not reached trial yet, but this may be legal under current law.
In summary, while this may all seem a bit sobering and really puts a huge new twist on current privacy law. But, as with most things, knowledge is power. I hope this and future blogs continue to educate you to be a more sophisticated consumer in this new field of self-improvement.
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