Public Figures and Genetic Paparazzi

Associate Professor of Law Yaniv Heled’s research focuses on legal and ethical aspects of biomedical technologies. He is the co-director of the Center for Intellectual Property Law.

You are researching what you call “genetic paparazzi.” Tell us more.
It’s very clear that when you are a public figure, you have less of an expectation of privacy because there is a public interest in information about you. is is well covered in case law and by courts.

This diminished level of legally enforceable expectations of privacy has already allowed for the emergence of a prosperous tabloid industry fueled by paparazzi. The stronger the public interest in a public figure’s information, the lower their expectation of privacy.

Does that also apply to their genetic materials? 

Yaniv Heled

Yaniv Heled

A strong case could be made that the public would want to know the medical history and genetics of public and elected officials. For instance, if a presidential candidate has the genetic makeup for Huntington’s disease, which develops later in life and will inevitably affect a person’s cognitive capabilities and emotional stability, does the public have a right to know? I am inclined to say yes, but regardless, the implication is that we could soon witness paparazzi carrying swabs and sterile tubes in search for genetic materials dropped by the subjects of their pursuit.

How likely is that to happen?
I think it’s inevitable — it’s actually already happening. Martin Shkreli was just sent to prison because he solicited people to collect Hillary Clinton’s DNA, and this past summer Madonna led a lawsuit against an auction house selling some of her private effects that may contain her genetic material. As we learn more about what genes mean and as genetic sequencing and analysis technology becomes more ubiquitous, such practices are going to become even more prevalent.

You can now sequence a person’s entire genome on the open market for just a couple thousand dollars. In the not-so-distant future, it will cost much less and be easier to obtain. We will have to determine what interest public figures have in their genetics that could be preserved based on existing privacy laws and doctrines, and what they do not.

What have you found in your research so far?
My co-author, Liza Vertinsky, an associate professor at Emory University School of Law, and I are only looking at cases where the biological material is taken in a nonconsensual context and unbeknownst to the subject in the context of civil litigation or law.

We consider two hypotheticals. One involves obtaining genetic material of a presidential candidate, and the other of a famous actor, then analyzing them and publicizing the results. One of these cases also involves selling the information and/or the material to a third party who offers genetic treatments based on the information.

With the possibility of designing for change in DNA, in the future we could imagine situations where desirable genetic attributes of celebrities could be available for private individuals. For example, say you want a unique eye color of a celebrity. If you know that person’s genetic makeup, hypothetically a lab could form a treatment that would create that eye color.

Or suppose you want to have a child with a certain celebrity. It’s likely that in the future, a clinic could create gametes from that person’s genetic material — this technology already has been used in mice.

What’s the argument for allowing genetic information to be publicized?
In regard to someone in an important office, such as president, who literally makes life-and-death decisions, or is in charge of the lives of millions, I think it’s legitimate for the public to expect to know certain things about that person. Just as the public has a right to know what the president’s finances are or have been, we argue the public has a right to know whether its public officials are prone to have certain illnesses.

What are the negative implications?
We are likely going to get into a realm of disclosures that are even more unsavory than what we are seeing now in the tabloid industry.

Do any current laws offer protection?
There are protections on people’s genetic information, even if they are public figures. And there are laws that could be perceived as protecting public figures’ interests in their genetics, such as privacy laws, HIPPA and right of publicity laws.

But we have doubts about public figures because, generally speaking, they have lower expectations of privacy.

We are mapping out the laws, which vary greatly between states, to get an idea of what could happen. In one of our hypotheticals, we consider what happens when genetic materials are obtained by a news outlet and then publicized nationally. There are a number of laws that could pose a problem to such news outlets, but we have not found something that would completely prohibit it.