Highlights from the 1998 Groves Annual Conference
The Impact of Genetic Information on Families:
Psychosocial Implications of Research from the
Human Genome Project
I went to the Groves Conference thinking, "What on earth
does the Human Genome Project have to do with me?" I came away thinking that this
project will affect all of us and the sooner we start thinking about it, the better.
Here are some highlights.
The Human Genome Project (HGP) is an international research program designed to construct detailed genetic and physical maps of the human genome, to determine the complete nucleotide sequence of human DNA, to localize the estimated 50,000-100,000 genes within the human genome, and to perform similar analyses on the genomes of several other organisms used extensively in research laboratories as model systems.
To learn all you could ever want to know about this project, click on:
http://www.nhgri.nih.gov/index.html
Genetic maps help us understand how genes behave when they are being passed on from generation to generation. Correcting the placement of a "misspelled" gene could conceivably prevent birth defects.
Currently, our ability to find a gene considerably outstrips our
ability to do anything about intervening or preventing problems.
David Reiss, M.D., Professor, Director of the Division of Research, Director of the Center for Family Research, Dept. of Psychiatry and Behavioral Sciences, George Washington University Medical Center.
Data from this emerging field allow us to consider genetic influences and family processes.
Genetic factors have substantial and pervasive influences on
psychological adjustment. Self esteem, adolescent autonomy, and social responsibility have
seemed very much social processes, but have strong and robust genetic influences.
Genetic influences change over the life span. Our genome is established at conception, but the genes turn on and off over the course of development. Some characteristics show high heritability early in adolescence (depression, for example), but the influence is reduced later.
Genetic influences contribute to stability and change. The same genetic factors that influence the processes also influence the psychological adjustment of individual members. The family unit is influenced by genes and the environment.
Preliminary findings from a carefully designed longitudinal study suggest that there is not a gene for adolescent anti-social behavior, but genetic factors that regulate how people relate to their families. Genetic influences seem to influence the family system first, and then adolescent development. Mechanisms in family systems such as mothers', fathers' and siblings' positivity seem to provide a protective system to protect against adolescent antisocial behavior. Reiss cautions that genetic factors play a role in human growth and development, but genetic influences should never be thought of as hard wiring. ("The heritability of obesity in countries with famines is zero.") Family processes mediate genetic influences.
Parents matter more than you ever thought. If we can intervene in
early childhood, shaping and helping parents respond differently, we can improve the
child's development and behavior. "We can see the dramatic influence of family
circumstances on the expression of the genes."
Reginald Burgess, Ph.D., Deputy Exec. Director of the American Association of Pastoral Counselors; Director of Research, Development, and Administration; Adjunct Professor of Psychology at Marymount and Loyola Universities
Families are on the front line in dealing with the new genetic information. Doctors are giving women information that forces them to make decisions about their pregnancies. These people will be the pioneers of the future their cumulative decisions will become the evolving policies.
There are three levels of genetic intervention to think about.
Level 1: Intervention is done to single individuals to alleviate a specific medical problem.
Most people of faith don't disagree with intervention at this level, and view it as similar to getting medical treatment for diabetes or any other medical condition. Issues of social justice dominate people's concerns at this level: Who will have access to the technology? Will insurance companies pay for it? Will you have to be rich to afford it?
Level 2: Prevention.(1)
Preventing genetic disorders gets to be trickier. It is the area where people of faith may be concerned that they are starting to play God. People go for genetic testing, but what do they do with the information? One use of the new information may be for prenatal diagnosis and abortion of the defective. Who decides what counts as defective? Is this different than eugenics? What will our society look like will there be diversity? Differences? How many standard deviations from the mean do you have to be before you get eliminated? Will there be more pressure for abortion? What if your insurance company says you have to abort?
Level 3: Programming.
At this level, we begin tampering with the human genetic pattern proposing gene therapy that would cross into future generations. Some people of faith are calling for public accountability to safeguard against political and military uses of gene therapy (creating an army of Goliaths, for example).
American families will be called to make difficult decisions long
before the American public is ready to make policies. The Human Genome Project is drawing
our attention to "what is life?" We are being asked to examine what is important
about life.
Evan De Renzo, Senior Staff Fellow, Clinical Bioethics,
NIH, Adjunct Professor Biotechnology at Johns Hopkins University and Marymount University.
Ethical, Legal, and Social Implications (ELSI) -- a major component of the Human Genome
Project.
Check out:
http://www.nhgri.hih.gov/About_NHGRI/Der/Elsi/elsiabs.html
Research Issues
Protection of privacy and confidentiality are major issues. When
you get unanticipated findings (such as non-paternity or non-maternity), what do you do
with that information? You can put women at very serious risk if they are in an abusive
family and someone questions the paternity of a child. There are very serious risks to
being involved in genetic studies, and you may be given information that can affect your
insurability, housing, and/or employment. Research regulatory oversight is designed for individuals,
and does not currently consider potential harm to the family or groups of families. What
if researchers find that your community has a higher risk for a specific disease? Genetic
researchers naturally seek the most homogeneous populations possible, and they may learn
things that have the potential to stigmatize families or communities.
Clinical Issues
Who needs to know? Who are physicians obliged to tell? Will they breach confidentiality if their index patient doesn't want the information to be shared with the family?
How good is the information? In situations where not everyone in the family will be affected, does everyone need to know that they could be at a higher risk for sudden death?
Professionals tend to have a bias toward seeking information the more you know, the better. Not everyone wants to know everything.
Should minors make their own decisions about genetic testing, or do their parents' information needs have priority? What about getting genetic information that suggests a child could die sooner than expected? How would that affect the family's interaction with that child?
Educational Issues
Students must be trained in ethical issues and not in some
bland version of ethical relativity. A goal for students: that they be meta-cognitive
about the moral filters they have.
Economic Issues
To let the cost drive genetic decision-making would reflect a very serious flaw in our national ability to discuss and generate sound policies. If we let cost be the driving force, the risk of bad decisions is especially high, and will likely exacerbate serious discrimination.
Do we think of ourselves as a diverse species that can come to consensus for reasons of shared existence or will we use genetic information to continue to narrow our scope about what makes us human? Genetic information will never answer the metaphysical questions about who we are and who we are to become.
Societal Issues
What does it mean to be healthy, normal? How do we define what is acceptable to society? Now that we can find out that these persons have a predisposition to xxxx, do we think they are diseased?
What will our tolerance be for inclusion of people in our society? Are you your genes? How much weight will be given to this genetic information? How could we harness that information to improve human life?
It's time we all started thinking and talking about these issues!
Note: This summary was prepared by Pat Nelson. Many thanks Pat for your hard work on this!
1. 1 For a discussion of these issues, see Doris T. Zallen, "We Need a Moratorium on Genetic Enhancement," The Chronicle of Higher Education, March 27, 1998, page A64.