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GENETIC TESTING
Volume 7, Number 4, 2003
© Mary Ann Liebert, Inc.
Genetics Providers and the Family Covenant:
Connecting Individuals with Their Families
DAVID J. DOUKAS
ABSTRACT
As genetic testing becomes more commonplace, medicine will likely face both family and individual demands
for access to, and control of, test result information. Past research has emphasized confidentiality concerns
of the individual and contrasted these claims with the “need to know” by others to avoid harm. These confi-
dentiality concerns, based on individual self-interest, are challenged by a singularly important aspect of ge-
netic testing—familial responsibility. As patients are often motivated to obtain genetic testing by an array of
“other-directed” considerations toward their own family (such as love, fiduciary responsibility, gratitude, etc.),
an accounting of these concerns is warranted. Understanding the relevance of family relationships and obli-
gations facilitates a fuller informed consent for genetic testing. Genetic counselors and geneticists engaging in
genetic counseling can account for the concerns of both individuals and their families using the family
covenant—a helpful, innovative model to address proactively boundaries of privacy and information sharing
within the family. This model focuses on two areas of discussion: (1) the demarcation of the boundaries of
confidentiality; and (2) the definition of “family.” The family covenant helps genetics providers consider what
information “should” be confidential, and with respect to whom.
315
INTRODUCTION
M
UCH ATTENTION HAS BEEN FOCUSED
on the future impact of
genetic testing on health care since the sequencing of the
human genome. One common query poses: Will we have the
wisdom to use this valuable information in ways that will be help-
ful rather than harmful (Doukas, 1991a)? Genetic information
has relevance for both the patient and family members. One key
aspect of future genetic testing will be the accounting for family
interests (Doukas, 1993). Our society recognizes the moral im-
portance of the family, but with obviously differing perspectives.
Although we may debate what constitutes a family (both genet-
ically and socially), if we are to respect individuals in the exer-
cise of their rights, then we need to acknowledge a right of free-
dom to associate with whom we wish in comprising what we
identify as our family (Doukas and Berg, 2001a). Medical in-
formation generally (and genetic information specifically) can be
very important to those we consider our family, however we are
linked to these persons. The past model of the single patient and
doctor in a dyadic relationship is archaic when we consider the
implications of genetic testing. What we have learned about pri-
vacy and confidentiality in past dyadic practice indicates that a
pragmatic, proactive response to the new challenge of account-
ing for families is needed. Some patients may want to release
this information, and others not. Some family members may want
to receive this information, and others may not. A question arises:
How can genetic test information be shared with family mem-
bers, and when?
MOVING GENETIC TESTING INTO
THE MAINSTREAM
Genetic testing for disease risk will someday soon become
an important tool in understanding, preventing, and making
prognoses about diseases in the general population (Doukas,
1991a, 1993). This testing will help risk assessment and also
diagnosis and treatment decision making. Despite the potential
of this testing, its use is not yet appreciated by patients or the
public. Arming patients with information on genetic testing tar-
geted to their individual needs will allow them to appreciate
better the potential impact and consequences of genetic testing
in combating future disease. Family and individual needs may
conflict, though, when handling genetic test result information.
Department of Family Practice and Community Medicine, Center for Bioethics, University of Pennsylvania, Philadelphia, PA 19104.
There is no way to know how lay persons will respond to ge-
netic information that may be of considerable import to their
family members. As we learn about the factors that predict test-
ing intention and behavior of individuals through current test-
ing methods and protocols, health care providers will be better
able to facilitate future informed consent. Informing patients of
the potential risks and benefits requires that genetic providers
appreciate what these risks and benefits mean to their patients.
Genetic testing may be of relevance beyond the genetics
clinic, having a presence in the near future in primary care
(Collins, 1997). Despite this forecast by Dr. Collins as well as
this author, implementation in the primary care setting is not
currently practical (Doukas, 1991a). Primary care physicians
appreciate this fact, as they view genetic testing with future
hope, but acknowledge the realities and limitations of the pres-
ent circumstances (Fetters et al., 1999). Currently, logistics and
knowledge are powerful impediments to primary care genetic
testing. Primary care physicians would need more time with pa-
tients, need to figure out how to work with whole families ef-
fectively, and need to be trained in genetic and counseling skills
(Fetters et al., 1999). The educational curricula on genetic in-
formation and counseling is already being changed in medical
schools and primary care residencies to anticipate these future
needs. Whether it is in the primary care setting or the specialty
clinic, assessing risk for future disease with the use of genetic
technologies will inevitably become more prevalent.
This paper begins with the premise that those genetics
providers currently involved in the art and science of genetic
counseling (both those human geneticists who counsel patients
and genetics counselors) will most likely work with individu-
als and their family members today and in the near future. These
genetics providers currently face dilemmas involving individ-
ual and family needs. The purpose of this paper is to discuss a
means drawn from primary care ethics, called the family
covenant, in which genetics providers negotiate parameters of
family disclosure of genetic information. This change is needed
to address shortcomings of the current testing situation. To han-
dle genetic information disclosure on an ad hoc basis is unten-
able, because it is a disservice to other family members. The
current means of dealing with confidentiality concerns regard-
ing genetic information requires a complex balance between re-
spect for an individual autonomy claim for absolute confiden-
tiality (with some expounding rigid stands of “never tell”) and
a claim to avoid third-party harm by breaching confidentiality
(with some arguing for more generous disclosure) (Fetters et
al., 1999; Brock, 2001; Rhodes, 2001). This paper proposes to
remove this ad hoc balancing act from the patient–physician
dyad and move it (temporally and logistically) to the level of
the genetics provider and the family. This effort would occur
proactively (rather than retroactively, either after testing has oc-
curred, or with a dispute in a court of law).
GENETIC TESTING, ETHICS,
AND THE FAMILY
A major ethical thrust of past genetic testing studies has fo-
cused on confidentiality consequences, with little attention on
the family (Andrews, 1997). These fears are rooted in past
screening programs for Huntington disease that revealed high
amounts of distress for conditions that “mark” the individual,
while providing no avenue for redress (Lamport, 1987; Tibben
et al., 1993; Sharpe, 1994a). Due to the first concerns noted in
these programs, a great deal of focus has been on the impact
of psychological distress and worry about genetic testing.
As an extensively studied case example, cancer genetics re-
search has cited many relevant factors regarding genetic test-
ing for breast or colorectal cancer risk. Five main patient con-
cerns surrounding genetic testing emerge from this literature:
(1) test validity (Lerman et al., 1997); (2) psychological impact
(Nowak, 1994; Sharpe, 1994b; Kadlec and McPherson, 1995;
Dickens et al., 1996; Baum et al., 1997; Croyle, 1997; Lerman,
1997; Lerman et al., 1998; Mahowald et al., 1998; Pasacreta,
1999); (3) ethical concerns regarding confidentiality and in-
formed consent (Kadlec and McPherson, 1995; Dickens et al.,
1996; Mahowald et al., 1998; Boetzkes, 1999); (4) health be-
havior, such as follow-up counseling and surveillance (Burke
et al., 1997; Lerman et al., 1999); and, of extremely high rel-
evance, (5) concerns about helping other family members
(Becker, 1974; Smith and Croyle, 1995; Julian-Reynier et al.,
1996, 2000; Winter et al., 1996; DudokdeWit et al., 1998; Ler-
man et al., 1998; Cappelli et al., 1999; Geller et al., 1999; Goe-
len et al., 1999; Jacobs and Deatrick, 1999; Lerman et al., 1999;
Vernon et al., 1999; Schwartz et al., 2000). These genetic test-
ing studies have often identified that initial high interest in test-
ing does not translate into testing behavior for a significant num-
ber of patients, secondary to psychological concerns about
worry, anxiety, stress, and stigmatization.
Analyzing genetic testing behavior (i.e., the actual receipt
of the genetic test results) has revealed that those who do seek
testing cite the importance of family-based concerns (Smith
and Croyle, 1995; Julian-Reynier et al., 1996; Winter et al.,
1996; Andrykowski et al., 1997; Lynch et al., 1997; Du-
dokdeWit et al., 1998; Lerman et al., 1998; Cappelli et al.,
1999; Cho et al., 1999; Glanz et al., 1999; Jacobs and Deatrick,
1999; Lerman et al., 1999; Richards, 1999; Vernon et al.,
1999; Bosompra et al., 2000; Julian-Reynier et al., 2000;
Schwartz et al., 2000). Indeed, one of the highest rated rea-
sons for ultimately receiving testing is concern about the fam-
ily (Julian-Reynier et al., 1996, 2000; Lynch et al., 1997; Cap-
pelli et al., 1999). Patients will have a broad range of concerns
and will likely ask themselves whether genetic testing should
be done because of the possible consequences, including those
for others in the family. This important motivation of “other-
based” responsibility is based on (1) fiduciary-based bonds of
trust between family members; (2) emotionally-based bonds
from love and respect to protect other family members from
harm; and (3) the reality of DNA being shared amongst kin.
The concern to protect other family members, coupled with
the altruistic concerns to help society in overcoming disease
through research participation, have been heretofore relatively
overlooked in evaluative research on genetics (Geller et al.,
1999). The individual’s values in considering their family in
testing vary from person to person and family to family, but
nevertheless comprise concepts of mutual concern and obli-
gation.
Focusing on family-based concerns may be the key to un-
derstanding how family members perceive the value of genetic
testing for future disease risk. Understanding family-based is-
sues may facilitate dissemination of potentially important health
DOUKAS
316
information within families. To appreciate what relevance
“family” has in medical decision-making, we need to under-
stand how patients interpret privacy, communication, fidelity,
and trust, as well as what they consider as legitimate claims by
others to genetic knowledge. Specifically, as patients do con-
sider “other-based” concerns (i.e., helping other family mem-
bers or society generally) and family disclosure of genetic in-
formation, these important aspects of genetic testing need to be
part of their counseling. As patients who engage in genetic test-
ing are often motivated by how they perceive their own re-
sponsibilities toward their own family, the resultant question is:
What methodology can geneticists and genetic counselors em-
ploy that will proactively account for competing claims of in-
dividuals and families?
FRAMING THE FAMILY COVENANT
FOR GENETIC TESTING
A helpful model to respond to this need, first termed by
Doukas in 1991, is the family covenant (Doukas, 1991b). This
model was further refined and scrutinized regarding primary
care-based genetic testing in medicine’s near future by Doukas
and Berg (2001a, 2001b). Given the considerations above of
where genetics is in practice, it is prudent to apply this primary
care-based concept to the place where it can be used today—
the genetics clinic. It is asserted that the family covenant is a
viable model that describes a proactive health agreement in
which the boundaries of privacy and information sharing within
the family (as defined by them) and their genetics provider are
negotiated and agreed upon. The family covenant moves be-
yond the dyadic model of patient–provider by proactively ac-
counting for the family of that patient. The family covenant’s
provider–family dynamic more fully accounts for ethical claims
within the family, based on two key concepts: promise keep-
ing and family-based mediation through communication. The
justification of the family covenant is promise-based. The ge-
netics provider assumes an obligation to provide health care for
the family as set forth by the parameters of the initial promise
described in Table 1.
The family covenant can and should be considered by adults
capable of providing consent, as well as minors with an ability
to consent, and guardians of minors and incapacitated persons
(Doukas, 2001a). Such a relationship would thereby define the
common ground for these persons when genetic testing is be-
ing considered. Furthermore, these considerations could be
cited as not being narrowly confined to genetic testing only, as
the diagnosis, treatment, and prognosis of other health matters
can have substantive impact on others surrounding the patient
(Roy, 2001; Trachtman, 2001). Although true, the focus of the
family covenant here is for information sharing in the specific
task of genetic testing. Should a family wish to construct a
broader covenant, this is achievable with the agreement of the
family members and the health care provider. According for
privacy of medical information is essential in the highly volatile
area of genetic testing. The notion of asking the family how
they would want to discuss genetic information themselves al-
lows them to set their own rules for their own microculture,
GENETICS AND THE FAMILY COVENANT
317
T
ABLE
1. K
EY
P
OINTS OF THE
F
AMILY
C
OVENANT
1. The genetics provider first approaches the patient for permission to initiate a family covenant.
2. Family members are included based on those who mutually consent to their entry into the agreement (whether
genetically linked or not). The initiation of any long-term agreement needs to be prefaced by an assessment of potential
participants to consider what constitutes appropriate sharing of genetic information within the family, and by whom.
3. The genetics provider is entrusted (as specified by the family participants) with care of the family, beginning with a
mutually consented promise between the provider and family members.
4. The family covenant would best be introduced before genetic testing, at a time relatively free of intrafamily ethical
conflicts. Initiating this agreement before conflicts would obviate the need to construct such a relationship if conflict
later arises when trust may be found wanting. Technical and ethical education on genetic testing to the family members
would first be discussed. The initial family–genetics provider agreement of the covenant will then address and account
for future individual patient and family benefit claims prior to testing.
5. All participating covenant members would agree to honor this covenant in future medical situations encountered under
the condition that each continues to respect it.
6. The genetics provider serves as a facilitator, both proactively and in an ongoing basis, as conflicts of family issues arise.
Trust accumulates over time, strengthening the family covenant, best conceptualized as a time indeterminate trial of
intervention (Doukas and McCullough, 1991).
7. When conflicts arise, the family and health provider use the agreed-upon framework of the covenant to resolve issues to
the best of their collective abilities. One potential appeals process to consider for assisted conflict resolution is the
services of a hospital ethics committee (as available and as allowed by the covenant participants) (Brock, 2001; Wertz,
2001).
8. Any family member may withdraw from this covenant and still receive medical care.
9. The genetics provider may withdraw from this covenant if family members irreconcilably violate legal constraints (which
would hold force regardless of the covenant, as discussed on intake) or if the professional integrity of the provider
compels his or her withdrawal. However, the previously negotiated agreement of the covenant will likely not hold upon
the covenant’s dissolution.
10. Family members (whether under the provider’s care or not) who do not wish to participate in the family covenant need
to be assured they will receive equal quality medical care.
then have the initial promise and ongoing trust sustain the
promise.
Genetic test information has obvious relevance for the index
patient, but also for their family (whether related by blood or
not). Empirical evidence demonstrates that patients want ge-
netic information shared among family members, as long as its
release is not counter to the patient’s wishes (Lehmann et al.,
2000). Genetic testing providers can better account for com-
peting personal and family claims by considering the family as
the unit of care in the family covenant. Genetics providers al-
ready recognize that family considerations are relevant, of
merit, and worthy of discussion by the individual patient when
genetic testing occurs (Biesecker, 1998; Wilcke, 1998). The
needs of other family members will vary according to the emo-
tional, logistical, and geographic links that bind them. One
might be tempted to throw up one’s hands and say, “I will just
concentrate on one patient at a time,” for a narrow construct of
autonomy would advocate such a course. However, a counter
to this claim would be that this era of molecular medicine chal-
lenges us to look back at those core concepts that drive med-
ical decision making. As a result, health care providers need to
be willing to tailor the method and content of informed consent
according to the subjective needs of the families they serve
(Biesecker, 1997; Geller et al., 1997; Wilcke, 1998). The fam-
ily covenant provides such a solution.
The relevance of genetic testing for those who surround us
is noteworthy in that true “respect for persons as free moral
agents”—an earlier construct of how we treat individuals—
would dictate an investigation of those values that underlie our
testing, to demonstrate a true informed consent (Englehardt,
1978). This earlier construct even cites the need to account for
a general duty to others grounded in a “type of covenant obli-
gation . . . derived from respect of the other members of soci-
ety” (Englehardt, 1978). Using the family covenant, we are
looking at the “first ring” of social construct outside oneself—
those persons whom we consider and define according to our
own view as family (Ashcroft, 2001).
Treatment of the family is a mutually agreed-to benefit when
engaging in family covenant health care. It is not advocated to
have trumping “familial autonomy” that can overrule the rights
of the individual. What is proposed is that free persons be al-
lowed to engage in prospective health care agreements that can
define who they are, how they interact, and how they share ge-
netic information. Always, the parameters would be set by its
constituents (e.g., the family may decide to share all, share noth-
ing, or something in between). These boundaries are consistent
with the goals set forth by the Cancer Genetics Studies Con-
sortium of proactively considering the individual and the fam-
ily in genetic testing, with an accounting of how information
will be shared among them (Geller et al., 1999).
PRACTICAL CONSIDERATIONS OF
THE FAMILY COVENANT
The family covenant has two major areas of consideration
that warrant further examination by genetics providers. First, at
its inception, the family covenant constructed by families and
genetics providers needs to articulate what “should be” the ap-
propriate level of confidentiality within the family (Geller et
al., 1997; Sommerville and English, 1999; Brock, 2001; Mayo,
2001; Menikoff, 2001; Rhodes, 2001; Wertz, 2001). Some fam-
ilies or providers may argue for absolute confidentiality of such
genetic information—period. Others may defend a more fam-
ily-based (even communitarian-based) view that allows for freer
passage of information. Confidentiality of genetic information
varies both by profession (in an individual sense and in pro-
fessional group stands) and by patient culture. The response of
the family covenant here is not to seize and hold the moral ter-
rain on one stand or the other of the confidentiality chasm. In-
stead, the family covenant allows for health care agreements
between like-minded family members and genetics providers.
This method allows for negotiated levels of confidentiality be-
tween family members and genetic providers. The issues dis-
cussed and agreed upon are neither contrived nor coerced, but
intended to be an identification of common ground before ge-
netic testing occurs. This approach is more proactive than re-
active, with a preventive ethics stance identifying conflicting
views of confidentiality prospectively. Family covenants could
be perhaps seen as erosive of individual autonomy claims, and
the confidentiality that goes with them. However, one must con-
sider the range of possible family covenants, including one in
which all information is to be kept private and that no family
member agrees to divulge information to others, or another
where participants promise to divulge all information learned
to other covenant members. Information will only be shared to
the extent allowed by the family covenant’s participants.
The promise-based foundation of this effort is quite different
from past genetic case law on genetic disclosure (i.e., the Pate
and Safer cases), or accounting for the claims of others through
an infectious disease approach (Pate v. Threlkel, 1995; Safer v.
Estate of Pack, 1996; Doukas and Berg, 2001a). The family
covenant is an attempt to head off the ethical quandary at the
pass, rather than have a test not revealed, with the ethical and le-
gal consequences that may follow. The family covenant advo-
cates the concept of family member-based (as opposed to
provider-based) disclosure, rather than any a new provider duty
regarding genetic disclosure. The provider would serve to facil-
itate and identify for family members means by which to fulfill
the original promise made by family members. The provider
should not be an arbitrator for all things genetic and ethical, to
whom all parties turn for a ruling (Ashcroft, 2001; Scheuerle,
2001). This would be an unfair imposition on the provider, and
a tempting piece of paternalistic fruit for the provider as well.
The fundamental value of the family covenant is the a priori ne-
gotiation of how privacy is to be respected in the family. The
mediation that the family covenant beckons is to “keep the
promise”—that promise made upon entry into the covenant, how-
ever the covenant members construct it. This promise can serve
as a foundation of trust that can be called to in future time of
conflict, with acknowledgment and respect of the original agree-
ment by the participants. The genetics provider acts as a touch-
stone for the original promise, and facilitates ongoing mediation
(and, if needed, renegotiation of the covenant), by bringing fam-
ily members together to review what they have promised each
other, and help resolve communication difficulties.
The second major area to be considered in using the family
covenant is what constitutes the “family.” The “nuclear family
paradigm” is not the only type of family relevant in genetic test-
ing, such that disparate family forms must be considered
DOUKAS
318
(Ashcroft, 2001; Ells, 2001; Koenig, 2001; Koppelman, 2001;
McKellin, 2001; Moseley, 2001; Parker, 2001; Resnik, 2001;
Roy, 2001; Scheuerle, 2001). Many issues can come into play
when one considers what is “other-based”; i.e.., health matters
can generally have a substantive impact on others in the fam-
ily. The interpretation of impact is a result of the ways we view
‘family.’ In considering the use of the family covenant as a
model in genetic testing, one must evaluate the relevance of
several constructs of family. While this paper cannot thoroughly
consider each of these, one must account for the variable ways
that family is seen in biological, sociological, legal, and ethi-
cal perspectives (Parker, 2001; Roy, 2001). Attempting to reach
consensus of what the family is may be impracticable. Instead,
it is argued to have the family define itself, by self-selecting
those persons (biologically linked or not) with whom they wish
to share a common informational bond.
The concept of the family covenant allows for open entry
and involvement to all those whom the participants consider to
be part of the family (Trachtman, 2001). No model can hope
to identify the structure or parameters of the definitive family.
The family should be allowed to define the family, even if these
participants may not be bound genetically by blood or legally
by marriage. This approach rejects a narrower construct of ge-
netic kin as sole claimants to genetic information (Koppelman,
2001; Roy, 2001; Stock, 2001). If the concept of illness (and
its risk) transcend the boundaries of the individual dyad-
provider relationship, then some accounting of all those who
may be affected is required.
Members of the family may involve multiple generations,
significant others, and friends who have a bearing on the health
and welfare of each other. Many whom one holds dear may not
be genetically related, yet these same persons may be deeply
relevant to their medical care. Families vary in structure, vary
in communication, and vary in trust. Accordingly, families will
each have different approaches to the concept of a family
covenant, with some very open in their shared disclosure, oth-
ers being very closed in sharing information, and many falling
between the polar ends. Some individuals may not want others
to whom they are related, or to whom they have significant so-
cial bonds (even spouses), to be covenant co-participants. This
is not only permissible, but is anticipated.
The family covenant is predicated on a promise, such that it
does not force the family’s design. If occasions arise where ge-
netic information is relevant to such noncovenant members, the
provider may advise the patient of the patient’s responsibilities
of divulging such information to others, based on both ethical
responsibilities and legal requirements for their jurisdiction (as
should occur now). This paper does not allow for a more de-
tailed analysis of the genetic and nongenetic family, or of
covenants that exclude family members, but subsequent analy-
ses will contrast these entities. However, providers can ac-
knowledge the standing of other nongenetic significant others
through their invitation, and mutually based promise of the fam-
ily covenant.
An important aspect of this process is the agreement of the
genetics providers and the participants, as each may have dif-
ferent perspectives on genetic disclosure. It is better to learn
(and come to some form of consensus) about the values dif-
ferences of this type before testing. Differences can then be ne-
gotiated or the participants or provider can decline to partici-
pate. This approach is preferable to having ethical dilemmas
arise because of testing, with no means of values discussion or
clarification in the family context (Silvers, 2001; Sprague,
2001). The family covenant allows for any concept of family
put forward, as long as its members and provider agree to it
(Steinberg, 2001). Could there be practical obstacles to con-
vening whole families in this manner? Logistical impediments
may arise, but this does not preclude using other means by
which to gather persons who may not be geographically in the
same place simultaneously. Secure video and Web-based video
links and speakerphones can all help alleviate such hindrances
(Doukas and Berg, 2001b).
CONCLUSION
The family covenant offers genetics providers an innova-
tive yet pragmatic way to address vexing issues of ethical and
legal concern, before the outbreak of conflict. It promotes
frank and open discussion of the “ground rules” on genetic
informational privacy in that family and opens lines of com-
munication. It encourages provider-based proactive and on-
going mediation and facilitation when appropriate. The fam-
ily covenant enhances respect for patient’s autonomy by better
accounting for and respecting individual preferences as well
as the methods by which they allow the sharing of genetic in-
formation with other family members. The model avails itself
for immediate use by genetic providers by providing guidance
as to covenant’s inception, structure, and negotiated agree-
ment on the agreed upon level of confidentiality and model
of the family. The family covenant is a practicable form
of preventive medicine in the genetics realm to help deal
with the consequences of genetic testing for individuals and
families.
ACKNOWLEDGMENTS
My thanks to Jessica W. Berg, J.D., Caryn Lerman, Ph.D.,
Laurence B. McCullough, Ph.D., and Kenneth A. Richman,
Ph.D. for their constructive feedback during the preparation of
this manuscript.
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Address reprint requests to:
Dr. David J. Doukas
Center for Bioethics
3401 Market Street, Suite 320
Philadelphia, PA 19104
E-mail: ddoukas@mail.med.upenn.edu
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