Knowledge of one's own genetic information may cause
conflict for other family members
PA) -- Now that the human genome has been sequenced,
more and more genetic tests will be sought by patients
for a multitude of diseases and conditions. Since genetic
information about one family member also supplies information
about other family members, conflicts between siblings
-- and parents and their children -- regarding who wants
to know/not know the contents of that familial information,
will certainly emerge. To alleviate this potential for
conflict, David Doukas, MD, of the Center for Bioethics
and the Department of Family Practice and Community
Medicine at the University of Pennsylvania School of
Medicine and Jessica Berg, JD, assistant professor of
law and bioethics at Case Western Reserve University,
offer a model of patient care known as the family covenant.
The family covenant -- which is explained in the American
Journal of Bioethics (Vol. 1, No.3) -- defines the roles
of the physician, patient, and family prior to the start
of the genetic testing. It also offers these participants
a mechanism to help resolve competing claims for confidentiality
and disclosure about information gained through the
testing. While intended for primary care physicians,
who care for multiple family members, the covenant is
especially useful for any health provider who may potentially
have contact with multiple family members (e.g., genetic
counselors and human geneticists). "The family
covenant is a healthcare agreement for a family and
a family physician that is intended to help these parties
with ethical dilemmas that may arise in medical decision-making,"
explains Doukas, who originally defined the concept
"The timing of this agreement -- before the testing
has started -- is important in order for each family
participant to discuss and define the boundaries of
confidentiality and the needs of other family members."
The primary care physician will be the likely point
of contact as genetic testing becomes more prevalent,
thus making him/her responsible for initiating discussions
about the covenant during the educational and counseling
process that normally takes place before the start of
any genetic testing. All parties who choose to be part
of the covenant consent to the premises of an initial
agreement as to what information is divulged and to
whom in a way deemed acceptable to all parties.
Family members who choose to not consent to the family
covenant are not bound by it. The physician's obligations
to covenant members are negotiated and clearly articulated
at the outset of the covenant, and the handling of any
future disputes is also discussed at this time.
"The family covenant is an on-going, growing, flexible,
voluntary healthcare agreement, based on a contract
that is consented to by the participating parties,"
states Doukas. "It is designed to educate patients
and family members about the potential implications
of genetic testing up front, before engaging in that
activity, and will facilitate communication by helping
patients and their physician understand how information
is to be shared within the family, as they design its
The dawning of the genetics revolution has the potential
to change the face of medicine. Patients and their physicians,
in good faith, need to consider the impact of genetic
test results on other family members. The family covenant
offers patients who desire genetic testing and their
families the opportunity to resolve competing claims
for confidentiality and disclosure before the conflict
begins, thus protecting each individual's right. The
use of this preventative ethics approach will allow
for the avoidance of greater difficulties that may arise
in the course of a patient's care.
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