Consumer Crusader

By Koren Wetmore
Legal Advocacy - Today
Lori Andrews
Lori Andrews
Photo: Michael Goss

In a world where laws lag behind technology, bioethicist Lori Andrews fights for people’s rights at the intersection of law and medicine.

It’s a mission that requires determination and the ability to field questions that range from heart wrenching to bizarre.

Take, for instance, the woman who asked about genetic testing for her two sons to see if one was predisposed to disease, because she could afford to send only one to Harvard. Or the surgeon who inquired about the legal rights of a frozen severed head that he wanted to attach to a suddenly available body.

“At one point I had a temporary secretary who threw out half of my messages because she thought they were pranks,” says Andrews, Distinguished Professor of Law and director of IIT’s Institute for Science, Law, and Technology (ISLAT).

For Andrews, who was drawn to law by a desire to draft more pro-consumer policies, her bioethics mission seemed almost predestined. She passed the bar exam on the day the first test-tube baby was born. A paper she wrote in law school garnered her an invitation to speak at the first world conference on in vitro fertilization. That speech led to a flood of inquiries from doctors eager to understand the legal and moral implications of their work.

Shortly after law school, she was asked to testify in Congress on issues related to surrogate motherhood and other reproductive technologies.

“At that point I was asked a lot of questions about what the law felt about this or that,” she says. “In many cases the law hadn’t yet caught up, and so I had to start answering based upon ethical principles.”

Listen to Lori Andrews, Distinguished Professor of Law, discuss one of her latest privacy initiatives in an IIT Magazine Audio Extra.

When Dolly the sheep was cloned, the White House requested Andrews’s advice on whether cloning of humans could legally be prohibited. She chaired the federal advisory commission that explored the ethical, legal, and social impacts of the Human Genome Project. Andrews also helped lead the successful charge against Myriad Genetics, a company that drove up patient costs and hindered medical research when it patented two genes associated with breast and ovarian cancers.

A talk she gave on gene patent issues inspired author Michael Crichton to draft Next, a novel based on the topic. Andrews’s own novels, a mystery series featuring fictional geneticist Alexandra Blake, have encouraged reading groups to discuss the legal and ethical issues raised in her books.

“I had a certain frustration with getting legal policy changed at the legislative level, and I wanted to spur public debate for things like genetic discrimination,” she says. “I knew I could reach more people by smuggling these ideas into traditional mystery novels.”

Recently Andrews began a new book with a different protagonist and a setting closer to home: a woman biotech researcher who lives in Chicago.

“We now need something that will protect people who search for and post health-care information online.”

She also launched a new initiative to protect the privacy of online health information. In a recent study of more than 200 medical apps, ISLAT researchers found that many leaked private data such as an individual’s daily glucose levels to data aggregators and marketers. Even someone’s online health topic searches and medical organizations “liked” on Facebook can be accessed by prospective employers or insurance providers, she says.

“We fought and eventually got a federal law passed that says employers and insurers can’t discriminate against you if you’re healthy yet have a genetic predisposition for a disease,” she says. “We now need something that will protect people who search for and post health-care information online.”

Named one of the 100 Most Influential Lawyers in America by the National Law Review for her pioneering work in health law, Andrews has no intention of leaving the fight. So, while technology continues to race ahead of policy, her efforts are helping to close the gap.