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Chapter Five: Genetics
Dilemmas
Juan Ramirez met Angelica Ruiz at the Spanish House on the campus
of a major mid-western university. He was drawn to her instantly,
and soon they were planning marriage. Juan had grown up in Chicago,
and Angelica in Gurnee, Illinois. Juan's family had originally come
from Puerto Rico, and Angie's from Lake Maracaibo in Venezuela.
Juan had always dreamed of a large family. As he and Angelica began
discussing their hopes and dreams, however, Juan got a big surprise.
Several of Angelica's relatives had died from Huntington's Disease.
HD is an autosomal dominant disease that has no effective treatment.
It begins in one's late thirties or early forties with peculiar
behaviors and limb movements and proceeds through a progressive
dementing process and worsening bizarre limb movements to inevitable
death after fifteen to twenty years. She did not know if she was
a carrier for HD. If she was, it was only a matter of time till
she was affected, and she had a fifty per cent chance of passing
this illness on to each of her children.
Juan did not know what to think. As he checked the HD website on
the internet that night, he learned more. There now was a DNA blood
test that could prove long before any symptoms occurred if a person
had Huntington's. All they had to do was obtain the appropriate
testing, and they would know if Angie had HD. If she didn't they
could happily proceed with their wedding plans. If she was positive,
however, Juan was shocked at what he read next. 10-12% of all HD
victims kill themselves, and 30% of those at risk, in one study,
said they would kill themselves if they discovered they had the
disease. Did Juan really want to have to deal with these problems?
Perhaps he was wisest just to break it off with Angelica and walk
away before he got in any deeper.
Michelle McKenzie's mother and grandmother and two of her maternal
aunts all had had breast cancer. She always knew she carried a higher
risk than most women for this disease. Now she sat in her internist's
office. Dr. Healy was completing her yearly physical examination,
and as she reviewed Michelle's chart her brows were furrowed.
"Most of your lab tests are completely normal," she said.
"Your physical exam, Pap smear, and mammogram are also just
fine. There is one other test that we could order, though, and we
probably should talk about it. A new genetic marker test has come
out for breast cancer risk. If you test positive for BRCA1 on Chromosome
17, we will confirm your much higher risk of breast cancer, and
will be fore-warned to follow your mammograms and breast exams that
much closer."
"Unfortunately, there is a down side. Should you ever need
to change insurance carriers, they will know that you tested positive
for BRCA1 and they might deny you health coverage for breast disease."
"That sounds unconscionable! That's immoral! Can they do that?"
stammered Michelle.
"I can't say that they would," said Dr. Healy, "but
stranger things have happened."
At the age of 42, Jennifer Talwin was caught completely by surprise.
As a mother of three, with the youngest age 12, Jennifer had certainly
not planned on becoming pregnant. After David's chemotherapy, the
doctor had told them that there was little to no chance of her becoming
pregnant again, so she had never obtained the tubal ligation that
she had previously planned on getting. Now at her obstetrician's
office, she had more unusual news to process.
"We will follow your pregnancy closely," said Dr. Nguyen,
"and of course we will get serial alpha-fetoproteins and ultrasounds.
That way, if your baby turns out to have Down Syndrome, we could
electively terminate."
The words slowly sunk in. "You're talking about killing my
baby, aren't you," whispered Jennifer. "I thought you
were a Christian."
"I am a Christian, certainly," said Dr. Nguyen. "And
that is exactly why I offer you this option. This was all a mistake,
and modern science has provided us a way to ensure that you and
your dying husband are not saddled with the added pain of dealing
with a child who has an incurable illness. Genetic testing is a
gift from God. Please let me help you in this way."
In 1988 the National Research Council endorsed a mind-boggling
research project that had been discussed for several years. The
Human Genome Project is an ambitious plan to map out the entire
human DNA blueprint. This project is spread over nine major research
centers, will probably cost upwards of $5 billion, and was originally
projected to take close to 20 years to complete. During this same
time period, a parallel project, privately funded, is taking place
in England under the direction of J. Craig Venter. In June 2000,
Dr. Francis S. Collins, an avowed Christian and Human Genome project
director, along with Dr. Venter announced the essential completion
of this monumental undertaking. (Continued research is ongoing.)
The benefits of these two projects are hard to fully fathom. Foremost
in most people's minds, however, is that we will soon gain a vastly
improved understanding of genetically inherited diseases. With this
understanding we could prevent and treat many diseases that currently
are unpredictable, inescapable and untreatable. This could completely
alter the way we do medicine.
So what is the cause for concern? There actually are a number of
concerns:
1) Could this information be used to discriminate against those
who have serious diseases in their gene pool?
2) Who would be responsible for maintaining confidentiality regarding
this sensitive information?
3) Would the information provided cause some people to give up
on life before their lives were over based on the negative predictions
inherent in their genes?
4) Would knowledge of future risks relegate some people to lower
class status, opportunities and perhaps health care? Who would
want to pour scarce monies into funding the education of people
who are not destined to learn much?
5) If important decisions are going to be based on this blueprint,
what are the false positive and false negative confidence intervals
for the test results?
6) Even if the testing is absolutely correct, many diseases are
caused by a combination of genetic and environmental factors.
These cannot always be controlled for. Thus, important decisions
might be made based on very incomplete information.
7) Even if one has the most gifted gene pool in the universe,
doesn't the free will and personality of the person in question
often play the decisive role in achievement? Don't we all know
people with little natural talent, who through sheer effort and
determination have accomplished great things?
Throughout history pessimists have warned that different technological
advances would create various foreseen and unforeseen dire consequences.
"If God wanted us to fly he would have given us wings. We'll
be burnt up if we fly into the air." "If God had wanted
us to ride automobiles, why did he give us horses? Those loud new
machines will spook all the livestock." The unknown effects
of electricity were thought to cause cancer and dementia.
Yet, some technologies have caused previously unforeseen problems.
Industrial pollution has killed many animals. DDT, an insecticide,
helped almost bring about the extinction of several species of birds.
The warm, unpolluted effluent from some factories caused the death
of fish that lived best in colder waters. The dam built as part
of the Tennessee Valley Authority nearly brought about the extinction
of a species of darter fish.
Where will all the new genetics knowledge lead us? Only God knows
for sure.
What does the Bible teach us about principles related to the genetics
debates?
Scripture and Discussion Questions
Genesis 11:1-9
Genesis 30:31-43
Genesis 4:6-12
Leviticus 19:9, 10, 13-15, 33, 34
1 Kings 3:3-14; 11:31-34
John 3:16
1) Genesis 11 discusses the Tower of Babel. Does this have any
bearing on the discussion of genetics today? What was the sin of
the people at the tower? Think together, again, about the concept
of "playing God".
2) Jacob, the schemer, relied on some interesting genetic principles
in this passage. Is there any basis for his theories? If not, why
did Jacob's flock increase?
3) How can we know if we should embrace a given evolving technology?
Are there any biblical guidelines for discerning this?
4) Cain had an unmatched genetic make-up. All his genes came directly
from Adam and Eve, the direct creations of God. Yet, he killed his
brother Abel. Was the evil in Cain a product of his genes, his environment,
or something else? Elaborate.
5) The passages in Leviticus, above, all deal with aspects of social
welfare. God clearly has an interest in the welfare of all his people.
Does this make you more or less interested in genetic intervention?
List arguments for and against intervention, from scripture if possible.
6) Solomon, directly descended from David, "a man after God's
own heart", received the best education money could buy. God
also granted him the gift of unusual, profound wisdom. Yet, in 1
Kings 11 we see that these were not enough to keep him from ruining
his life and destroying the combined Kingdom of Israel/Judah. To
what do you attribute his demise? How does this affect our discussion?
7) John 3:16 seems to indicate that eternal life, the only ultimately
meaningful possession, is unrelated to anything we could engineer
genetically. Does this fact change your thoughts any on funding
for genetic research? If you were a U. S. senator would this affect
your resource allocation decisions?
8) Role-play Angelica and Juan's vignette. Does Juan have an obligation
to go ahead and marry Angelica" Does Angelica have an obligation
to not bear children? Discuss as a group and defend your positions
from scripture if possible.
9) Is a doctor who wants to practice good medicine morally culpable
if he or she works for a managed-care organization? What are the
potential conflicts of interest in working as a managed care doctor,
versus those in working as a fee-for-service physician?
10) Should insurance companies be forced to pay for all the new
genetic susceptibility testing? If not for all, then where should
the line be drawn between covered and non-covered testing?
11) Some scientists refuse to carefully consider the ethical implications
of their new research. Who should decide if scientific inquiry should
be allowed to go forward in any given new direction?
12) If our bodies are to be temples for the Holy Spirit, is it immoral
for a woman to have prophylactic mastectomies performed if she is
at high risk for breast cancer?
13) Some HMOs set standards for frequency of mammograms that differ
from American Cancer Society guidelines. If they claim that the
ACS cannot prove the necessity of the more frequent breast screening
is this good business, or is this immoral? Discuss.
Comments
1) Some Christian thinkers believe that all managed-care arrangements
are inherently unethical, as they remove the patient's physician
from his or her primary role as patient advocate. Financial considerations
for the whole group come into play. On the other hand, if a physician
only considers the interests of the patient in front of them, there
is the possibility that he or she may do things that are clearly
not in the interest of society as a whole. This is not a simple
issue. In the traditional fee-for-service model of medicine, the
incentives are aligned to encourage more testing, more interventions,
and more medication use.
2) Most Americans agree that medical costs are rocketing out of
control, and that actions need to be taken to limit expensive forms
of care. On the other hand, most Americans want the very best care
available for their family. Discuss the obvious conflict inherent
in these two statements.
3) The problem of medical-record confidentiality is vastly compounded
by the use of electronic medical records. The federal government
is enacting major legislation to protect patient confidentiality.
These regulations will cost doctors and hospitals millions of dollars
to implement.
4) Blacklisting patients for insurance for their medical problems
seems immoral. Conversely, insurance companies are businesses and
need to make a profit. If they do not raise the costs for people
who are high risks, then low-risk individuals will pay more to pick
up the difference. This is called cost-shifting, and is done all
the time. Discuss fairness versus justice in this setting.
5) A major Christian publication profiled a woman who refused to
have an abortion or to receive chemotherapy when she was pregnant
and cancer was found in her body. Her choice to refuse abortion
cost her her life. The tone of the article was that she was behaving
in a Godly, principled fashion. It might be interesting for your
group to discuss other Godly answers this couple might have come
to.
PRAYER REQUESTS: As you close today's
lesson together, pray that God will give you wisdom as you think
about these difficult questions. Pray that God will raise up Christian
voices to enter this complicated debate, and that you will be "wise
as serpents and innocent as doves" when it comes to thinking
about, discussing, and voting on public policy issues that involve
genetics.
For Further Reading:
Ronald Munson, Intervention and Reflection-Basic Issues in Medical
Ethics, 5th ed., (New York: Wadsworth Publishing Company, 1996).
Munson's text is used on a number of secular university campuses.
It is not written from a Christian perspective. Nonetheless, for
the inquiring Christian, this book is loaded with classic essays,
case presentations and decision scenarios. It may stretch your horizons.
Chapter seven is devoted to genetics, and includes four thought-provoking
readings, and decision scenarios.
Between the time that I write this and the time that you use this
material with your class, much will have been written on the Genome
projects. Nonetheless, sometimes to best savor the flavor of a momentous
event it is helpful to review its initial public announcements.
For a nice concise overview of the DNA projects and an initial national
newspaper account see: Tim Friend, "Genome projects complete
sequence-Unraveling of DNA code is a blueprint for the future of
medicine" USA Today, 23 June 2000, page 1.
Another example of an initial review is an article from Wire Services,
"Researchers decipher riddle of human genome" The Indianapolis
Star, 27 June 2000, page 1. Several related articles covering this
monumental breakthrough accompany the lead article.
John F. Kilner, Rebecca D. Pentz, and Frank E. Young, ed., Genetic
Ethics-Do the Ends Justify the Genes? (Grand Rapids, Michigan: William
B. Eerdmans Publishing Company, 1997). A Horizon in Bioethics Series
Book, produced through The Center for Bioethics and Human Dignity,
this series of essays provides an extensive overview of bioethical
concerns in genetics.
H. Richard Beresford, Chair, Genetics Testing Task Force, Practice
Parameter: Genetic Testing Alert-Statement of the Practice Committee
Genetics Testing Task Force of the American Academy of Neurology.
Neurology 1996:47: 1343-1344. The American Academy of Neurology
Practice Committee establishes ad hoc committees to speak to new
and developing concerns in the practice of neurology.
American Medical Association, Code of Medical Ethics-Current Opinions
with Annotations, (Chicago, Illinois: American Medical Association
Press, 1996). This edition has separate topics of gene therapy,
genetic counseling, genetic engineering, genetic screening and genetic
testing a) by employers, b) by health insurers, and c) of children.
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