Copyright 2000 Boston Herald Inc.
The Boston Herald
October 19, 2000 Thursday ALL EDITIONS
SECTION: NEWS; Pg. 014
LENGTH: 630 words
HEADLINE:
Forum: New technology poses threat to patients' privacy
BYLINE: By MICHAEL LASALANDRA
BODY:
If you still think your medical records are
just for your eyes and those of your doctor, think again.
Experts warned
yesterday that your most intimate records can be accessed by anyone who can hack
into a computer.
The best you can hope for is that laws will protect you
from being denied a job or health insurance because of a condition you have or
may one day develop.
"We prize privacy, but we're losing it," said Dr.
Thomas Delbanco, chief of general medicine and primary care at Beth Israel
Deaconess Medical Center, at a conference yesterday. "Let's just assume it's
going to disappear." He said that when he checked the records of 13 of his
hospitalized patients using a computer while he was out of town recently, he
found that some 147 people - doctors, nurses, technicians and secretaries - had
also accessed them while he was away.
It wasn't unusual and didn't
especially concern him, he said. And neither does it appear to concern most
patients, he said, as long as the information isn't able to be used to deny them
the ability to get employment or health insurance.
Massachusetts last
summer became the 39th state to pass legislation designed to protect residents
against such consequences based on genetic tests.
A bill pending in the
Legislature seeks to protect the privacy of all medical
information. But even its sponsor wonders whether it is worth pursuing.
"We need to seriously question whether privacy is the vestige of a
bygone era or if it is still salvageable," said Rep. Jay Kaufman, D-Lexington,
the bill's chief sponsor.
Kaufman's bill "reaffirms the fundamental
right of privacy" where medical records are concerned and bans the use of such
data for any purpose other than providing health care. It also sets penalties
for violations.
"I'm skeptical about whether it is possible to say we
still have privacy, but I think it's worth trying," he said.
At the
privacy conference, sponsored by Blue Cross-Blue Shield of Massachusetts and the
Massachusetts Biotechnology Council, doctors, scientists, legislators and
consumer activists dueled over the perils that the technology explosion poses
for patients.
Dr. Philip Reilly, a geneticist and president of
Interleukin Genetics Inc., a biotech firm in Waltham,said there is genetic
information on file for millions of Americans, including all babies born in
Massachusetts, all those who have been in the military and all who have been in
prison.
"We have tens of millions of bits of genetic data on file," he
said. "Who should have access to these samples?"
Dr. James Gusella, a
geneticist at Massachusetts General Hospital and the discoverer of the gene for
Huntington's disease, said researchers must have the data to advance medical
science.
He said most patients are willing to allow researchers access,
as long as they have a reasonable assurance the data will be kept private.
Ironically, many patients who agree to genetic testing for research
purposes don't want to know the results of their tests, he said.
And he
said researchers should not be compelled to disclose such results if patients
don't want to know.
"The individual has to have the choice," he said.
Reilly said one of the most chilling potential impacts of the genomic
revolution could come when millions of prospective parents use genetic testing
to decide to abort fetuses determined to carry even the mildest of defects.
He said women in one survey said they would be more disturbed to have a
child with a gene for obesity than one for cystic fibrosis, for example.
In contrast to state-sponsored selective breeding programs such as were
imposed in Nazi Germany, he said, the "neo-eugenics" movement will reflect the
choices of individual parents.
"This is going to change humankind," he
said.
LOAD-DATE: October 19, 2000
