wfn.org | Genetic Discrimination

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"UNITED METHODIST DAILY NEWS" by SUSAN PEEK on Aug. 11, 1991 at 13:58 Eastern,
about FULL TEXT RELEASES FROM UNITED METHODIST NEWS SERVICE (3290 notes).

Note 3290 by UMNS on Nov. 14, 1996 at 16:01 Eastern (5103 characters).

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SEARCH:   genetic, discrimination, Lapham, employment, insurance
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Contact:  Joretta Purdue                         576(10-71B){3290}
          Washington, D.C.  (202) 546-8722           Nov. 14, 1996

Researcher warns of discrimination
based on genetic disorders

     WASHINGTON (UMNS) -- Discrimination on the basis of genetic
information exists, according to United Methodist E. Virginia
Lapham, an associate professor of pediatrics at Georgetown
University here.
     Research concerning this assertion by Lapham and two
associates was published in the prestigious Science magazine Oct.
25, leading to a flurry of stories in the media. That a social
science topic appeared in that prestigious publication is unusual,
and she and her co-authors did so by invitation, said Lapham, a
member of the United Methodist Church's Task Force on Genetic
Science.
     Following publication of the article she supplied ABC
Television's Nightline with the contacts and context for two shows
on the larger genome project and how people's lives are affected
by genetic disorders.
     Lapham said the four-year study group created in 1988 by
General Conference, the issues it raised and the people it put her
in contact with, in addition to her 30-year career -- spent mostly
working with children and their parents in diagnostic clinic
situations -- led to her part in the Human Genome Project.
     The project, she explained to United Methodist News Service,
is a 15-year national effort begun in 1990 to map all the genes of
the human body.
     "Here is this huge national thing that is going to affect all
of us and all of health care, and most people don't really
understand it," she recalled thinking before she sought funding
for a study on the effects of genetic disorders on people's lives.
     Lapham explained that researchers are saying everyone has six
to 10 deleterious or "bad" genes.
     "We are really a very short time away from, if we want,
getting genetic report cards and finding out what we are all at
risk for and how this is going to affect us, and do we want to
know?" Lapham observed. "If one person in a family gets
information, that's information about everybody."
     She and two other people applied for grant money to study the
ethical, legal and social aspects of genetic disorders from two
standpoints: that of the "consumer" -- an individual with an
identified genetic disorder or a family member -- and that of the
health care professional.
     The paper that appeared in Science magazine dealt with only
11 of the 129 questions posed to 332 consumers in telephone
interviews -- a tiny part of a huge project, she explained.      
     She regards her research and its publication as an
opportunity "to give voice to people who can't speak for
themselves," she said.
     She does not know how typical are the 332 respondents who
volunteered to participate in her survey. "Certainly there's
discrimination out there," she said. 
     "People are being denied health insurance on the basis of the
genes that they were born with -- and life insurance and
employment," she observed.
     As one of the interviewees pointed out, Lapham said,
availability of affordable health insurance may mean the
difference between life and death.
     The people who participated seemed to want to help others
deal with or prevent the problems they were having, she noted. 
They raised a variety of issues, such as the implications of
various responses to life insurance questions about genetic
diseases and the appropriate age to tell children they may be
carriers of a genetic disorder.
     Lapham and her colleagues want to be certain no one thinks
they advocate stopping the Human Genome Project. They conclude the
Science article, saying, "There is strong support to continue
research and to find ways to deal with genetic discrimination
including federal or state legislation, guidelines and standards
among insurers, employers, researchers and health professionals."
     Lapham is now in a writing phase, working with the topics
addressed in the other 118 questions on the consumer survey and in
the written survey that was completed by health care
professionals.
     She said she would like to see a similar survey on
discrimination done using random sampling, but for herself she
would like to go back to the participants in this study with more
specific and more open-ended questions.
     A supplemental grant allowed her and her colleagues, with the
help of a professional TV crew, to prepare five videotapes and a
manual for use in educating health care professionals and the
public about the effects of genetic disorders. The tapes bear the
name of the study, the Human Genome Education Model, and are
available for $50 plus $5 shipping from the Georgetown University
Child Development Center, 3307 M St. NW, Washington, DC 20007-
3935.
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