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| Employee Veronica Godfrey, who says she
is doesn’t like needles, braved the phlebotomist to participate
in the NIEHS Environmental Polymorphism Registry. Joan Jacobs
of Constella Health Services was one of five phlebotomists
collecting blood samples at the NIEHS recruitment. |
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Some 420 people showed up in just 1 week, each leaving behind a few
teaspoons of blood for the NIEHS Environmental Polymorphism Registry
and tucking a crisp $20 bill into their pockets as they left.
But it was not the money alone that lured NIEHS staff in for the
donation. Many employees said they felt it was their responsibility
to donate to biomedical research, and some recruited family members
to register as well.
Employee Judy Hanson and her 25-year-old son Tony Belch enrolled.
He said he participated because the research could lead to breakthroughs
that could help millions of people, even save lives somewhere down
the line. Hanson said it is exciting to be part of DNA research
and thinks it is a great opportunity to help scientists better
understand the disease process.
Heather Vahdat, assistant manager of the clinical research program
at Integrated Laboratory Systems, which will handle the recruitment,
blood sample collection and DNA isolation, said she was impressed
with NIEHS participation.
In Rodbell Auditorium, people at five recruiting stations performed
intake functions. They explained the study, gathered data and provided
and administered consent forms.
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Heather Vahdat, the study manager
for the NIEHS registry |
When it's all said and done, the registry will have about
20,000 samples that will provide DNA and data to researchers looking
for genetic clues to disease. The registry is being created in collaboration
with University of North Carolina investigator Paul Watkins, director
of the UNC General Clinical Research Center.
Participants were recruited at UNC clinics and at corporations
in the Research Triangle area and outlying counties. Patricia Chulada,
program administrator in the NIEHS clinical program, said enrollment
will continue for about 5 years, or until the 20,000 samples are
collected.
According to the consent information, each donor's personal information — name,
gender, birthday, address, telephone number and email address — will
be entered into the registry's database. DNA will be extracted
from the blood sample, processed anonymously, encoded with a secret
identification number and placed in the DNA bank.
The DNA in the registry will be archived for up to 25 years. During
that time, NIEHS and UNC researchers will use the DNA to look for
genetic differences that might be associated with common health
conditions like diabetes, heart disease and cancer. Plans are under
way to allow Duke researchers access to the DNA as well. Researchers
who find a genetic difference of interest may investigate further
by asking those donors to participate in a follow-up study, Chulada
said.
Signing the consent form for the registry does not mean a donor
will automatically be included in follow-up studies. These studies
will require several different levels of review before the samples
are decoded and donors are called back. Nobody who participates
in the registry will be identified in any report or publication
resulting from use of the registry, the consent form said.
To protect the privacy of donors, study officials obtained a Certificate
of Confidentiality from NIH, which is valid for the duration of
the study. The certificate means researchers cannot be forced to
disclose information that may identify anyone in the study. 
