Slide 1. Research in behavioral genetics attempts
to elucidate the role that genes might play in determining types
of human behavior. Its findings can understandably grip our attention
and raise significant ethical issues. This module examines a selected
set of these issues that are particularly relevant for behavioral
genetics research.
Slide 2. Work in behavioral genetics has examined
an array of areas that are fundamental to being human-everything from
personality1 and memory2 to fear3 addiction4,
5, 6, violence, sexuality, and intelligence. The results of this
work can be controversial.
Slide 3. The controversial nature of this research
has not escaped attention. Several prestigious groups have previously
addressed and continue to examine the ethical issues associated with
this research.
Slide 4. Might a genetic basis for intelligence
result in its "medicalization," or the notion that today's variation
of normal will become tomorrow's stigmatizing illness? Could such
findings affect social stigmatization itself, i.e., might it decrease
(because individuals are no longer to blame because they are "born
with it") or increase (by creating an identifiable, biologically-based
outcast group)? And how might a genetic basis for behavior change
societal notions of responsibility and accountability? For example,
if a real genetic predisposition to violent behavior were discovered,
would courts use this knowledge to mitigate individual responsibility
for crimes, determine punishment, or even prevent violent acts?
Slide 5. This module provides an overview of ethics
in behavioral genetics research. By the end of the module, the user
should be able to: (1) Recognize some of the major ethical issues
that can be encountered in behavioral genetics research; and (2)
Describe ways of minimizing harms related to these issues. The emphasis
in this module is on the ethical issues, not the regulatory considerations
that are tightly related to them.
Slide 6. First we describe ethical issues arising
in the context of research, and then turn to the ethical issues that
arise in the application of research results.
Slide 7. Within the context of research, ethical
issues are related to defining the trait; minimizing risks to research
subjects; obtaining group input; and obtaining informed consent.
Slide 8. Defining the trait to be examined in behavioral
genetics research is critical to determining who is enrolled in research
as well as the validity of the findings. The traits in behavioral
research can be heterogeneous and inherently subjective, making them
difficult to measure and characterize. Similarly, they can have considerable
phenotypic variability.
Slide 9. While defining a phenotype to be studied
is important for all genomics research, it can be especially tricky
for behavioral traits. For example, what precisely defines an individual
as "homosexual"? Does it require one sexual experience with a member
of the same sex, many, or simply sexual attraction? What constitutes
a "sexual experience"? Similarly, if one is interested in the genetic
contribution to intelligence, how can or should intelligence be measured?
Slide 10. While research in behavioral genetics
can have physical and psychological risks, such as those related
to blood draws and answering questions on surveys, the main risks
to be minimized in behavioral genetics research tend to be social
and economic. Social risks include isolation due to stigmatization
of particular behaviors as well as discrimination. As a consequence,
there can be economic repercussions including difficulty obtaining
or maintaining employment or housing.
Slide 11. Researchers have an obligation to minimize
these risks, primarily through ensuring confidentiality in the research
process. This includes using secure databases and obtaining personally
identifiable information only when necessary. In some instances,
for example when doing research on illegal behaviors such as narcotic
addiction, it may be appropriate to obtain a Certificate of Confidentiality.
A Certificate of Confidentiality protects research records from subpoena
in civil or criminal proceedings.
Slide 12. As discussed in the first module in this
series, obtaining input concerning proposed research can be important
for several reasons. First, it respects the groups being studied.
Second, in certain cases this input can help identify risks of the
research that may not be known to researchers and thereby provide
an opportunity to reduce the risks. Third, by obtaining group input
trust may be enhanced, thereby increasing participation.
Slide 13. Informed consent is a key protection for
those who participate in most research. Nonetheless, obtaining meaningful
consent for some behavioral genetics research can be problematic
due to questions related to the decision-making capacity of potential
participants. Some, but not all, behavioral genetics research will
involve research subjects with reduced decision-making capacity (e.g.,
cognitive impairments, dementia, or acute schizophrenia). Not enrolling
individuals who lack the capacity to give informed consent may protect
them from exploitation, but it also excludes them from its potential
benefits and impedes valuable research. Of course, the label of a
specific condition does not necessarily imply the lack of adequate
decision-making capacity to give consent. However, some conditions
and circumstances may be important triggers for formally assessing
this capacity and obtaining consent from legally authorized representatives
when valid consent cannot be obtained from individuals.
Slide 14. When individuals are determined to have
inadequate decision-making capacity, two alternatives might help
fulfill the requirement of informed consent: One approach is to modify
the traditional informed consent process, thereby respecting autonomy
and enabling individuals to give their own informed consent. For
example, individuals with schizophrenia may benefit from directed
educational interventions to aid them in the informed consent process16.
Alternatively, the traditional process can be supplanted by prospective
authorization or proxy consent from a legally authorized representative
(LAR). In general, the former alternative may be preferable.
Slide 15. "Applications of research results" encompasses
several different issues: benefit sharing and commercialization,
the duty to recontact study participants, balanced reporting of research
findings, and the social and legal implications of the research.
The first two issues are covered in the first module in this series,
Ethics and Genetics Research in Populations. The last two are tightly
related and deserve specific attention in the context of behavioral
genetics research.
Slide 16. Honest and understandable reporting of
scientific results are arguably part of the responsible conduct of
research, because the way the information from this research is used
may be influenced greatly by popular understanding of the issues at
hand. Two areas where the honest and balanced reporting of research
results is intimately associated with the way research is received
by the public are in describing the findings from research with animal
models, as well as the social and legal implications of research findings.
Slide 17. One area where balanced reporting plays
an important role in the application of research results is in describing
findings from research using animal models. From mice to primates,
animal models have been useful in behavioral genetics research, providing
a way to move beyond knowledge of some hereditary basis toward understanding
developmental behaviors and individual variation17. However,
results from animal models can easily be extrapolated inappropriately
to humans prior to confirmation of results, and they may be interpreted
reductively. Reductionism attempts to explain complex traits or behaviors
in overly simplistic terms, ignoring the concept that some phenotypic
traits cannot be fully explained by genotype alone18.
Many human behaviors, such as sexuality, seem to be influenced by
many factors including environment and culture, in addition to biology.
This underscores the limitations of animal models in behavioral genetics
and the need to be attune to such limitations in reporting results
obtained from this type of important research.
Slide 18. The results of behavioral genetics research
also raise substantial social concerns, such as the medicalization
or geneticization of behaviors. "Medicalization"21, 22 of
behavior is the notion that today's variations of normal may become
tomorrow's medical illness23. "Geneticization"24, 25,
26 is the similar belief that individual variation (including
behavioral differences) is due solely to differences in DNA sequence.
At the heart of both, is the concern that conceiving some behaviors
as "illnesses" will lead to far-reaching effects, whether in prenatal
diagnosis and pregnancy termination, changing views of people with
disabilities27, or increased stigmatization of "abnormal" behaviors.
The gravity of these far-reaching effects makes clear the need for
balanced reporting, lest important policy decisions be based on an
incorrect or misleading interpretation of research findings.
Slide 19. Beyond social issues related to behavioral
genetics research and its reporting are a set of legal concerns that
may be equally influenced by the way research results are reported
and speak to many questions about what it means to discover a genetic
'basis' for behavior. For instance, will researching a genetic predisposition
to violent behavior lead to changes in legal notions of responsibility?
The courts might use a genetic predisposition to violent behavior
for different purposes at different times: to mitigate responsibility
or culpability, increase or decrease the severity of punishment,
or perhaps initiate preventive detention of those deemed at risk
for violent behavior28. Although the question of behavioral
genetics in the courtroom awaits more certain associations between
genes and behavior-associations that many believe are now on the
horizon-the need for balanced reporting is clear.
Slide 20. Research in behavioral genetics promises
to enhance our understanding about fundamental aspects of being human.
Further, it may lead to improvements in well-being. Nonetheless,
this research is associated with some complex ethical issues. Fortunately,
careful attention can limit the effects of some of the ethical issues
associated with doing behavioral genetics research. However, there
are broad social implications of behavioral genetics research that
also need to be considered by scientists, sponsors, scholars, and
society.
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