You’ve seen the ads from companies that promise to tell you, based on your DNA, where your ancestors came from. You’re eager to trace your family’s roots, so you order a test kit, send in your sample, and await the results.
Your involvement with the company may end there, but two Penn State researchers say that for your DNA sequence — your genome — the journey has just begun.
What you may not realize is that when you get your DNA sequenced, in most cases you don’t own the sequence in a legal sense. The company that sequenced it does, or at least, in our current legal framework, it can act as if it does: It can sell or give your data to other organizations, which often are not bound by the agreement you signed with the sequencing company. Even if you pay for just the basic service that will allow you to sketch your ethnic background, the company may sequence your entire genome — and then pass that information along to others.
An open-ended journey
Your genome’s first stop will probably be at a research institution, where it joins a database of thousands or millions of other genomes that researchers use to pinpoint genes that correlate with specific diseases or health risks. Those institutions, in turn, may partner with businesses that use the data to develop commercial products and services they can sell, such as pharmacogenomics drugs.
“Many, many people do not understand what the potential uses of their DNA might be,” says Barbara Gray, emerita professor of business in the Smeal College of Business.
She and Forrest Briscoe, professor of management and organization at Smeal, have built their careers studying organizational actions and decision-making, especially in situations that involve controversy and ethical choices. Genomics presents them with a whole new kind of challenge and opportunity.
“It’s not too often that you get to study a new, emerging field of organizations, and on top of that, one that has a lot of interesting heterogeneity, including private sector firms from different kinds of industries, nonprofit organizations, universities, hospitals and health-care systems, and government agencies,” says Briscoe.
Like ethnographers documenting an unfamiliar culture, he and Gray attend gatherings of people in the field, ask questions, and try to discern the relationships and value systems that underlie the conduct they observe. They’re intrigued by the ethical dilemmas the field presents: How can the need for privacy co-exist with the need for researcher access to the data? “We’re interested to see how these problems materialize, how people perceive them, and what can and what will be done to address the potential downsides of genomics,” says Gray.
They hope to map the entire arena: who is creating genomic databases, where the data is housed, how it’s secured, how it’s being used and by whom, how all that is regulated, and who speaks for the individuals whose genomes are the raw material for the whole endeavor — all while the field continues to develop at a vertiginous pace.
Promise and peril
The first complete human genome sequence was published in 2003, after a 13-year international effort that involved hundreds of researchers and cost $2.7 billion. Since then, sequencing technology has gotten faster and much less costly. At the same time, the advent of supercomputing centers that can analyze and compare millions of genomes has turned the mountain of raw genomic data into a motherlode of invaluable information. National agencies, huge corporations, and tiny startups all are vying to amass the biggest and best collections of genomes and discover their marketable secrets. In 2017, investment in genomics businesses topped $3 billion.