Do-It-Yourself Biology

We begin today with a very human story of a father who is bucking the scientific communty to help his daughter. The daughter is Beatrice Reinhoff, now five years old, but born with a rare genetic disorder that has yet to be diagnosed. Despite all of the advances in studying the human genome over the past few decades, very little is known about the variants that cause common, not to mention rare, genetic diseases. It’s still a wilderness, says Beatrice’s father, Dr. Hugh Reinhoff, a physician in San Francisco.

Dr. Reinhoff has sought the opinions of experts around the country, but nothing quite fit Beatrice’s unusual set of symptoms. Frustrated by the medical community’s lack of answers, Reinhoff set up a bona fide do-it-yourself DNA lab in his attic and started digging himself.

We found the story of Dr. Reinhoff’s uphill battle in the February edition of WIRED Magazine and asked him to join us. Doctor and father Hugh Reinhoff is out of the "lab" for a few days. We caught up with him at Johns Hopkins, in Baltimore.

Hugh is by no means the only researcher toiling at the fringes of the scientific and medical establishment. A growing number of amateur scientists are conducting experiments in their garages and basements. One group in the Boston area calls itself DIYbio, as in do-it-yourself. It formed in May of last year, and now has about twenty members.

Two of DIYbio members join us from the Christian Science Monitor studios in Boston. Mackenzie Cowell, a freelance web designer and the group’s co-founder, and Kay Aull, a synthetic biologist by day, and genome hacker by night.

(Photo by Mackenzie Cowell)