A majority of Americans believe it is appropriate to
use reproductive genetic testing to avoid having a child
with a life-threatening disease, or to test embryos to see
if they will be a good match to provide cells to help a
sick sibling, a new report of the Genetics and Public
Policy Center reveals. However, most Americans believe it
would be wrong to use genetic testing to select the sex or
other non-health-related genetic characteristics of a
child.
"Public debate and media coverage of reproductive
genetic technologies hide a surprising level of concordance
among Americans for using genetic testing to identify risks
of disease," said Kathy Hudson, director of the Johns
Hopkins University-affiliated center, which evaluated the
study. "But we also found that Americans fear a world where
using genetic technologies may compromise many of the
values our society holds sacred."
The results of what is believed to be the largest
public opinion survey ever conducted of American attitudes
toward genetic testing reveal that more than 67 percent of
Americans approve of genetic testing of embryos during in
vitro fertilization procedures to select those embryos free
of a fatal disease-causing gene mutation to transfer to a
woman's uterus. High levels of support for this application
are shared across most demographic groups — men,
women and different racial and ethnic groups; lowest levels
of support (49 percent) are found among fundamentalist and
evangelical Christians. Perhaps surprisingly, a majority
(52 percent) of those who assign human embryos maximum
"moral worth" — deserving of utmost respect and
protection — also approve of this application.
The report includes results from qualitative and
quantitative studies of how Americans feel and think about
reproductive genetic testing and how these technologies
might best be regulated. Supported by a grant from the Pew
Charitable Trusts, the center's research included 21 focus
groups, 62 in-depth interviews, two surveys with a combined
sample size of more than 6,000 people and both in-person
and online town hall meetings. The studies probed the use
of testing embryos, fetuses and adults. Information from
genetic tests can be used to decide whether to attempt,
continue or terminate a pregnancy, or to select which
embryos produced through IVF to use to try to start a
pregnancy.
While most participants had heard of genetic testing
at some level, the study found that the pace of technology
in this field has rapidly outstripped public awareness.
Awareness about some of the more advanced technologies
available — such as preimplantation genetic
diagnosis, or PGD, performed on embryos in the lab before
they are placed in the mother's uterus — was very low
among all demographic groups.
"The specter of unchecked advances raises many fears,
such as designer babies, eugenics and genetically modified
human beings," the report notes. Fully three-quarters of
all survey respondents, for example, agreed with the
statement "technology will inevitably lead to genetic
enhancement and designer babies." Focus groups and town
hall meetings, which allowed researchers to explore
participants' responses in more depth, revealed that
Americans don't fear the technologies per se but rather
fear that "unrestrained human selfishness and vanity will
drive people to use reproductive genetic testing
inappropriately," such as to select for nonmedical but
socially desirable characteristics.
Many focus group participants mentioned that use of
reproductive genetic technologies represents a "slippery
slope" on the way to "treating children like products."
This concern was shared by fully 70 percent of survey
respondents.
According to the report, Americans "fear a world in
which children are expected to be perfect, and parents are
expected to do everything possible to prevent children with
genetic disease from being born." For many participants,
these technologies raise concerns about how society might
treat individuals with disabilities in a world where the
birth of disabled persons might be preventable, and where
the cost of testing and treatment might lead to disparities
in who can afford them.
The study reports that 84 percent of survey
respondents are "concerned about unregulated reproductive
technology getting out of control." A majority of surveyed
Americans want and expect oversight "to ensure safety,
accuracy and quality of reproductive genetic testing." For
example, 61 percent of respondents agreed that the safety
and quality of PGD should be regulated.
But 70 percent of survey respondents also are
"concerned about government regulators invading private
reproductive decisions." Indeed, only 38 percent support
the idea of the government regulating PGD based on ethics
and morality.
"These exceptionally nuanced attitudes of the American
public are not mirrored in the polarized political debates
that currently paralyze public policy," Hudson noted.
A companion report, Reproductive Genetic Testing:
Issues and Options for Policymakers, explores a variety of
possible actions that public and private sector decision
makers could take to oversee appropriate use, cost, access
and safety of reproductive genetic testing, issues that
arose in focus group discussions and town hall meetings.
"Many observers believe new policies —
governmental or private — are needed to keep pace
with the rapid changes in reproductive genetic testing,"
the companion report notes, ranging from enacting limits or
bans on these technologies to leaving decisions about them
up to parents and their physicians. The report outlines the
full range of policy options to address the scientific,
legal, regulatory, ethical, moral and societal issues
raised by carrier testing, prenatal genetic testing and
preimplantation genetic diagnosis of embryos generated
during IVF and presents the pros and cons for each. "Our
purpose in this report is not to advocate on behalf of any
particular policy but to guide policy-makers through the
difficult issues that complicate all the available
regulatory options," Hudson said. "Any decisions —
including the decision to maintain the status quo —
should be undertaken with clear-eyed understanding of their
potential impact."
The report concludes with a call for more research and
a need for critical data — the number of people
likely to use reproductive genetic tests, how people
currently access the tests, and the safety and accuracy of
currently available tests, among them — to develop
appropriate and effective evidence-based policy.
Both reports are available on the Genetics and Public
Policy Center Web site
www.dnapolicy.org.
The Genetics and Public Policy Center is a part of the
Phoebe R. Berman Bioethics Institute at Johns Hopkins and
is funded through a grant from the Pew Charitable Trusts.
The mission of the center is to create the tools needed by
decision makers in both the private and public sectors to
carefully consider and respond to the challenges and
opportunities that arise from scientific advances in
genetics.
GO TO