Discussion leader: Gary Banks

DNA Privacy.  It is now inexpensive to at least partially sequence a person’s genome.  Companies like Ancestry.com, GEDMatch and 23andMe.com have done it for over 20 million people.  There are other databases where people have uploaded their DNA profile insearch of relatives.  There are also growing databases, some public, with individual’s DNA gathered from medical testing or crime events.  Recently, a cold case of rape/murder was solved by taking DNA from the crime scene and quickly identifying the killer’s cousin that then lead to an arrest.  That’s good to solve a horrible crime but there are also risks and concerns.

Certainties:

  1. Almost all of us have, will shortly have, our DNA profile, or that of a close relative, in an on-line database.  It could be from genealogy hobbyists, voluntary samples, medical tests or police actions.  There will be incentives and pressure to be profiled, e.g., Stamford Health will need your DNA profile as part of their standard healthcare program – you may have already consented.  Babies are being tested at  birth.   All those routine blood tests could be stored for medical research.  
  2. The massive DNA databases, along with personal medical history will lead to healthcare breakthroughs for both us personally and the public health overall.    Personalized medicine – both treatments and prevention is the future.
  3. The DNA databases can be searched with a court order, but many are open and companies will be building their own databases.  It easy to picture an offer for a “free” DNA test (like free email or facebook) if you send them a sample.  Police can simply upload a DNA profile and search for relatives.
  4. The predictive value of your DNA profile will improve – or at least people and organizations will believe it is predictive.  Those predictions could involve health,  behavior, intelligence, …
  5. Companies and organizations will figure out a way to monetise and benefit from that data.  

I have a bad feeling this is already out of control:

  1. Companies such as insurance, pharmaceutical, your employer,  police, or schools will exploit your DNA profile.  Given the experience with google and facebook, any sort of opt-in or consent laws will be ineffective.   Think of spam from a pharmaceutical company “Your DNA profile indicates you are at risk of macular degeneration – take our stuff now and save your eyes. ”  Or “Your child’s DNA profile indicates they will not succeed in our most demanding academic program.”  “Your DNA profile indicates you should not own a gun, have a pilot’s license, or be trusted with children.”  Companies would claim they are providing a public service – and say talk to your doctor.  Modern day eugenics.
  2. How about discoveries made from your DNA?  Think of Henrietta Lacks – 17,000 patents derived from her cells without compensation.  A few people survive deadly things – ebola, HIV, cancer, …  Do you deserve compensation if you have some unique and valuable genetic trait that a pharmaceutical company uses?  Legal precedent is you don’t have rights over your bio samples.
  3. Can a dating company require genetic testing to claim they only match people who have compatible genetics?  Should you avoid marrying a person who carries the same deadly recessive gene as you?   
  4. Most of us would not volunteer our fingerprints or consent to have our phone tapped.   Yet we don’t even have to directly have our DNA sequenced to be visible to the government.  It is legal to collect a coffee cup or cigarette butt to get a DNA sample.  Police departments are using desktop machines, under less than rigorous laboratory protocols by people with limited training.   Seems like fishing is inevitable – e.g. browse for local people who “lack empathy”.  Risk of false charges or being brought in for questioning.
  5. Are we capable of responsibly interpreting the data?  The public is not allowed to write their own prescriptions.  Could people have their lives ruined – be filled with anxiety, get dangerous or useless medical treatments, fall prey to quacks, even be driven to suicide by not having a medical professional interpret the data?  Google “headache” to get a scare.   
  6. Already the DNA testing companies warn people they may be upset by what they find.  Your parents and siblings are not biologically who you thought they were.  Sperm donors being identified.  A sibling you didn’t know you had.  There are happy endings for sure – but not always.
  7. Lack of checks and balances.  Without them there will be abuse.    

 

 

 

 

 

 

From The Conversation:

Your genome may have already been hacked. https://theconversation.com/your-genome-may-have-already-been-hacked-95763 

DNA apps promise deeper insights for consumers – but at what cost? https://theconversation.com/dna-apps-promise-deeper-insights-for-consumers-but-at-what-cost-96257

Americans want a say in what happens to their donated blood and tissue in biobanks  Americans want a say in what happens to their donated blood and tissue in biobanks

 

 

5 biggest risks of sharing your DNA with consumer genetic-testing companies https://www.cnbc.com/2018/06/16/5-biggest-risks-of-sharing-dna-with-consumer-genetic-testing-companies.html

https://www.nytimes.com/2019/02/21/business/china-xinjiang-uighur-dna-thermo-fisher.html?emc=edit_na_20190221&nl=breaking-news&nlid=57463667ing-news&ref=headline

Genealogists Turn to Cousins’ DNA and Family Trees to Crack Five More Cold Cases https://www.nytimes.com/2018/06/27/science/dna-family-trees-cold-cases.html

https://www.nytimes.com/2019/02/16/health/sperm-donation-dna-testing.html

How your third cousin’s ancestry DNA test could jeopardize your privacy. Public DNA databases can be used to find you — even if you never shared your own DNA. https://www.vox.com/science-and-health/2018/10/12/17957268/science-ancestry-dna-privacy

We will find you: DNA search used to nab Golden State Killer can home in on about 60% of white Americans https://www.sciencemag.org/news/2018/10/we-will-find-you-dna-search-used-nab-golden-state-killer-can-home-about-60-white

How an Unlikely Family History Website Transformed Cold Case Investigations. Fifteen murder and sexual assault cases have been solved since April with a single genealogy website. This is how GEDmatch went from a casual side project to a revolutionary tool. https://www.nytimes.com/2018/10/15/science/gedmatch-genealogy-cold-cases.html

When a DNA Test Reveals Your Daughter Is Not Your Biological Child https://www.theatlantic.com/science/archive/2018/10/dna-test-divorce/571684/

23 and me Privacy Policy. https://www.23andme.com/about/privacy/

Ancestry.com Privacy Statement https://www.ancestry.com/cs/legal/privacystatement

The FBI’s CODIS database: https://www.fbi.gov/services/laboratory/biometric-analysis/codis

Also on CODIS:

An overview of human genetic privacy from the NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5697154/

https://www.nytimes.com/2019/01/21/science/dna-crime-gene-technology.html

NYU LAW NEWS

Testing DNA: In her new book, Erin Murphy investigates how the criminal justice system misuses genetic identification

http://www.law.nyu.edu/news/ideas/erin-murphy-forensic-dna

Familial DNA Searches and the Law

https://criminal.findlaw.com/criminal-rights/familial-dna-searches.html

ACLU: The Police Want Your DNA to Prove You’re Innocent. Do You Give it to Them?

https://www.aclu.org/blog/privacy-technology/medical-and-genetic-privacy/police-want-your-dna-prove-youre-innocent-do-you

https://www.nytimes.com/2019/02/04/business/family-tree-dna-fbi.html

https://www.nytimes.com/2019/02/17/us/jerry-westrom-isanti-mn.html

Privacy, Security, and the Legacy of 9/11 September 10, 2015 – Daniel Klau, UConn Law

https://today.uconn.edu/2015/09/privacy-security-and-the-legacy-of-911/

Electronic Frontier Foundation on Medical Privacy

https://www.eff.org/issues/medical-privacy

Dear Mr. Banks,

Thank you for your inquiry.  Generally, and depending on the test ordered by your physician, blood samples are retained anywhere from 3 days to 2 weeks after the testing is performed, after which they are appropriately discarded.  

Regards,

Todd M. Lieval

Privacy Analyst