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The Ethics of Genetics by UMass Lowell Conference Raises Issue of DNA Banks for Us All

By Used with permission from the Lowell Sun Online By SUSAN McMAHON Sun Staff

LOWELL Humanity's voracious appetite for information about itself will soon be whetted, with advances in the field of genetics enabling scientists and researchers to gather more information about individuals than every before.

But an ethical question remains.

"What should we do with that information?" asked Dr. Phil Reilly, a lawyer, physician, geneticist and bioethicist.

The CEO of Interleukin Genetics Inc. in Waltham and author of Abraham Lincoln's DNA, Reilly spoke at UMass Lowell's second annual bioinformatics conference Friday, part of a two-day lineup of speakers and presentations. Dr. James Cassatt, director of the National Institute of Health was the keynote speaker at Thursday's session.

Topics such as evolutionary genomics, bioinformatics in the classroom and computational biology. Turnout has been high, with a cross section of industry, faculty and students attending the presentations. About 100 people attended each keynote speech.

Bioinformatics is a field of study that combines the interests of the life scientist with the skills of a computer scientist. Modern science requires large amounts of data, which can be combined and processed through computer programs. Bioinformatics is the result.

But while the conference was about the field as a whole, Friday was all about genetics and the ethics surrounding the information we soon will be able to discern from every person.

Reilly pictured a world where every human being has their DNA stored in banks, a product of postnatal blood screenings for genetic conditions.

"That is where we're going. Without a doubt," he said.

He raised ethical question after ethical question, and answers were few and far between.

Should blood relatives be informed when an individual has a genetic condition for which they're at risk? What if the individual doesn't want to tell them?

Should prenatal screenings for a genetic condition be given, when it could result in a termination of the pregnancy? What if the condition, in its worst forms, is painful and debilitating, but many people develop a milder form?

And if you have a known family predisposition toward an illness, does that shift you categorically from a healthy person to a sick person?

"Imagine if we could screen newborns for predisposition to schizophrenia. What should we do with that information?" Reilly asked.

A twist to that question what if the treatment must be given before the first psychotic break, usually in adolescence, but results in side effects?

The study of the building blocks of all living things is changing everything.

"The real thesis, in my view, is that genetic information, and the kinds of information we will acquire about our and other species, really puts us in a world-changing place," Reilly said.

And bioinformatics can hold one of the keys to studying genes and producing a world where those questions will be asked.

"It really is important to encourage academic researchers to work across departments and work with the industrial community ... to see what we can do to move civilization forward," said Thomas Costello, chairman of the UMass Lowell computer-science department. "You can do research that will have an impact on people's lives."