A battle between billionaires over the control of country club tennis courts six years ago could shape the future of genetic privacy. That is what a rapt audience attending a conference at Harvard Law School was told on聽17 May. We had gathered there to discuss the ethical and legal considerations of the rapid spread of technologies that collect, analyse and alter DNA.
Canadian businessman Harold Peerenboom and Marvel CEO Ike Perlmutter have been feuding for years, sparked by a disagreement over the management of recreation areas in their Florida neighbourhood, and fuelled by聽a聽subsequent campaign of defamatory mail anonymously sent to their local community.
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Peerenboom suspected Perlmutter of sending the hate mail. To find out if this was the case, Peerenboom worked with his聽lawyers to get a sample of Perlmutter鈥檚 DNA from a water bottle he used during a deposition. A similar approach was used to gather evidence against the suspected Golden State Killer last year, after police pinpointed a man by using a genealogy website.
In 2013, a judge ruled that Perlmutter had a reasonable right to assume his genetic information on the lip of a water bottle wouldn鈥檛 be surreptitiously swiped, and that doing so deprived him of his 鈥渞ights of ownership, possession, control, and privacy鈥�, according to the case documents.
The Perlmutter case changed the conventional wisdom that genetics isn鈥檛 property, Jessica Roberts of the University of Houston in Texas told me at the meeting. It sets a precedent that could rein in police investigations.
It could also protect prominent people from a new kind of snooping. 鈥淚t鈥檚 only a matter of time before we will see genetic paparazzi publishing genetic information on tabloid pages,鈥� says Liza Vertinsky at Emory University in Georgia. 鈥淟awsuits will follow.鈥�
Madonna has been known to hire cleaning crews to wipe down hotel rooms she has stayed in, for fear of just this scenario. But Vertinsky says it isn鈥檛 just celebrities who may be targeted, so could presidential candidates.
Vertinsky wonders how the public would respond to hearing that a candidate has genes linked to risk-taking or schizophrenia, even though having a gene for a condition doesn鈥檛 necessarily mean you will develop it. Should voters base their opinions on the聽possible future health of candidates? She believes it won鈥檛 be long before courts have to rule on breaches of privacy like this.
The conference also considered issues that affect people beyond the rich and famous, including the erosion of anonymity, particularly when it comes to sperm donation.
Genetic ancestry tests like those from AncestryDNA and 23andMe 鈥� along with 90 or so other US companies 鈥� now make it possible to track down relatives that may never have wanted to be found.
In February, Danielle Teuscher of Portland, Oregon, submitted her聽5-year-old daughter鈥檚 DNA to聽23andMe, and found the mother of the sperm donor she had used to conceive her child. She聽contacted her daughter鈥檚 biological grandmother, and then聽received a letter from NW聽Cryobank, the sperm bank she had used, saying she had violated their donor privacy agreements.
They threatened $20,000 in penalties and rescinded access to sperm from the same donor she had purchased to conceive more children. 鈥淲e聽know there is no anonymity, but we鈥檙e still pretending there is,鈥澛爏ays Seema Mohapatra at Indiana University.
These issues extend beyond sperm donation. Kif Augustine-Adams of Brigham Young University in Utah told attendees about the revelation of a painful family secret. Her daughter鈥檚 decision to take an ancestry test聽led to the revelation that Augustine-Adams had a sister she聽wasn鈥檛 aware of.
It turned out that her mother became pregnant as a result of a聽rape, and the child had been adopted. 鈥淲ashington state adoption law had offered her anonymity,鈥� she says.
This law has since changed, but聽some other states still promise privacy for biological mothers who have been raped. But only 2聽per cent of a population needs to take a consumer ancestry test for 99 per cent to become traceable through their third cousins, meaning many such promises will聽soon become meaningless.
鈥淎 de facto national DNA database is on the horizon, if it鈥檚聽not already here,鈥� says Natalie Ram at the University of Baltimore in聽Maryland. Aside from a few聽precedents set by quirky lawsuits such as the Perlmutter case, we聽have almost no legal framework with which to govern its far-reaching power.
