Medical Ethics or Bioethics
Medical Ethics or Bioethics
the fields of medical treatment and research. Medical decisions involving moral issues
are made every day in diverse situations such as the relationship between patient and
physician, the treatment of human and animal subjects in biomedical experimentation, the
allocation of scarce medical resources, the complex questions that surround the beginning
and the end of a human life, and the conduct of clinical medicine and life-sciences
research.
Issues in Medical Ethics The advent of new medical and reproductive technologies in
recent years has complicated how ethical decisions are made in medical research and
practice. This slide show highlights some of the most prominent issues in medical ethics:
assisted reproductive technologies, human fetal tissue transplantation, cloning, and
abortion. © Microsoft Corporation. All Rights Reserved.
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Medical ethics traces its roots back as far as ancient Greece, but the field gained
particular prominence in the late 20th century. Many of the current issues in medical
ethics are the product of advances in scientific knowledge and biomedical technology.
These advances have presented humanity not only with great progress in treating and
preventing disease but also with new questions and uncertainties about the basic nature of
life and death. As people have grappled with issues on the frontier of medical science and
research, medical ethics has grown into a separate profession and field of study.
Professional medical ethicists bring expertise from fields such as philosophy, social
sciences, medicine, research science, law, and theology.
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SIDEBAR
Fraud in Science
Science is the search for truth. Its tools are rationality, objectivity, experimentation, and
the free exchange of reliable information. But what happens when a scientist reports
unreliable or fraudulent information? How common is fraud in science? Can science
distinguish the fraudulent from the genuine? What steps are scientists taking to police
themselves? Science journalist Christopher King reports on these questions and other
controversies surrounding fraud in science.
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Medical ethicists serve as advisors to hospitals and other health-care institutions. They
have also served as advisors to government at various levels. For example, experts in
medical ethics assisted the United States government from 1974 to 1978 as members of
the National Commission for the Protection of Human Subjects of Medical Research. The
commission was formed in response to several large-scale experiments that used human
subjects who were tricked into participating. In the late 1990s the National Bioethics
Advisory Commission, at the direction of President Bill Clinton, studied issues related to
the cloning of human beings. Ethicists also serve as advisors to state legislatures in the
writing of laws concerning the decision to end life support, the use of genetic testing,
physician-assisted suicide, and other matters. Medical ethics has even become part of the
landscape in the commercial world of science. An increasing number of firms involved in
biotechnology (the business of applying biological and genetic research to the
development of new drugs and other products) regularly consult with medical ethicists
about business and research practices.
The field of medical ethics is also an international discipline. The World Health
Organization founded the Council for International Organizations of Medical Sciences in
1949 to collect worldwide data on the use of human subjects in research. In 1993 the
United Nations Educational, Scientific, and Cultural Organization (UNESCO) established
an International Bioethics Committee to examine and monitor worldwide issues in
medicine and life-sciences research. The UNESCO directory lists more than 500 centers
outside the United States. The International Association of Bioethics was founded in
1997 to facilitate the exchange of information in medical ethics issues and to encourage
research and teaching in the field.
In the United States and Canada more than 25 universities offer degrees in medical ethics.
In many instances, the subject is also part of the curriculum in the education of physicians
and other health-care professionals. Many medical schools include ethics courses that
examine topics such as theories of moral decision-making and the responsible conduct of
medical research.
II HISTORY
The examination of moral issues in medicine largely began with the Greeks in the 4th
century bc. The Greek physician Hippocrates is associated with more than 70 works
pertaining to medicine. However, modern scholars are not certain how many of these
works can be attributed to Hippocrates himself, as some may have been written by his
followers. One work that is generally credited to Hippocrates contains one of the first
statements on medical ethics. In Epidemics I, in the midst of instructions on how to
diagnose various illnesses, Hippocrates offers the following, “As to diseases, make a
habit of two things—to help and not to harm.”
The most famous ethical work—although the exact origin of the text is unknown—is the
Hippocratic Oath. In eight paragraphs, those swearing the oath pledge to “keep [patients]
from harm and injustice.” The oath also requires physicians to give their loyalty and
support to their fellow physicians, promise to apply dietetic measures for the benefit of
the sick, refuse to provide abortion or euthanasia (the act of assisting a chronically ill
person to die), and swear not to make improper sexual advances against any members of
the household. “In purity and holiness I will guard my life and my art,” concludes one
section of the oath. For most of the 20th century, it was common for modified versions of
the Hippocratic Oath to be recited by medical students upon the awarding of their
degrees. For many people, the oath still symbolizes a physician’s duties and obligations.
The idea of ethical conduct is common in many early texts, including those from ancient
India and China—cultures in which medical knowledge was viewed as divine or magical
in origin. Echoing the Hippocratic Oath, the Caraka Samhita, a Sanskrit text written in
India roughly 2,000 years ago, urges the following commandment to physicians, “Day
and night, however you may be engaged, you shall strive for the relief of the patient with
all your heart and soul. You shall not desert the patient even for the sake of your life or
living.” Similar sentiments can be found in the Chinese text Nei Jing (The Yellow
Emperor's Classic of Inner Medicine), dating from the 2nd century bc. This work stressed
the connection between virtue and health. Three centuries later, the work of the Chinese
physician Sun Simiao emphasized compassion and humility, “...a Great Physician should
not pay attention to status, wealth, or age.... He should meet everyone on equal
ground....”
In Europe during the Middle Ages, the ethical standards of physicians were put to the test
by the bubonic plague, the highly contagious Black Death that arrived around the mid-
1300s and remained a threat for centuries. When plague broke out, physicians had a
choice: They could stay and treat the sick—risking death in the process—or flee. The
bubonic plague and other epidemics provide an early example of the challenges that still
exist today when doctors must decide whether they are willing to face personal risks
when caring for their patients.
By the 18th century, particularly in Britain, the emphasis in medical ethics centered on
proper, honorable behavior. One of the best-known works from the period is Medical
Ethics; or, a Code of Institutes and Precepts, Adapted to the Professional Conduct of
Physicians and Surgeons, published in 1803 by the British physician Thomas Percival. In
his 72 precepts, Percival urged a level of care and attention such that doctors would
“inspire the minds of their patients with gratitude, respect, and confidence.” His ethics,
however, also permitted withholding the truth from a patient if the truth might be “deeply
injurious to himself, to his family, and to the public.” At roughly the same time American
physician Benjamin Rush, a signer of the Declaration of Independence, was promoting
American medical ethics. His lectures to medical students at the University of
Pennsylvania in Philadelphia, spoke of the virtues of generosity, honesty, piety, and
service to the poor.
By the early 19th century, it seemed that such virtues were in short supply, and the public
generally held physicians in North America in low esteem. Complicating the problem
was the existence of a variety of faith healers and other unconventional practitioners who
flourished in an almost entirely unregulated medical marketplace. In part to remedy this
situation, physicians convened in 1847 to form a national association devoted to the
improvement of standards in medical education and practice. The American Medical
Association (AMA), as the group called itself, issued its own code of ethics, stating, “A
physician shall be dedicated to providing competent medical service with compassion
and respect for human dignity. A physician shall recognize a responsibility to participate
in activities contributing to an improved community.” This text was largely modeled on
the British code written by Percival, but it added the idea of mutually shared
responsibilities and obligations among doctor, patient, and society. Since its creation, the
AMA Code has been updated as challenging ethical issues have arisen in science and
medicine. The code now consists of seven principles centered on compassionate service
along with respect for patients, colleagues, and the law. The Canadian Medical
Association (CMA), established in 1867, also developed a Code of Ethics as a guide for
physicians. Today the CMA code provides over 40 guidelines about physician
responsibilities to patients, society, and the medical profession.
In recent years, however, the field of medical ethics has struggled to keep pace with the
many complex issues raised by new technologies for creating and sustaining life.
Artificial-respiration devices, kidney dialysis, and other machines can keep patients alive
who previously would have succumbed to their illnesses or injuries. Advances in organ
transplantation have brought new hope to those afflicted with diseased organs. New
techniques have enabled prospective parents to conquer infertility. Progress in molecular
biology and genetics has placed scientists in control of the most basic biochemical
processes of life. With the advent of these new technologies, codes of medical ethics have
become inadequate or obsolete as new questions and issues continue to confront medical
ethicists.
Throughout history the practice of medical ethics has drawn on a variety of philosophical
concepts. One such concept is deontology, a branch of ethical teaching centered on the
idea that actions must be guided above all by adherence to clear principles, such as
respect for free will. In contemporary bioethics, the idea of autonomy has been of central
importance in this tradition. Autonomy is the right of individuals to determine their own
fates and live their lives the way they choose, as long as they do not interfere with the
rights of others. Other medical ethicists have championed a principle known as
utilitarianism, a moral framework in which actions are judged primarily by their results.
Utilitarianism holds that actions or policies that achieve good results—particularly the
greatest good for the greatest number of people—are judged to be moral. Still another
philosophical idea that has been central to medical ethics is virtue ethics, which holds that
those who are taught to be good will do what is right.
Many medical ethicists find that these general philosophical principles are abstract and
difficult to apply to complex ethical issues in medicine. To better evaluate medical cases
and make decisions, medical ethicists have tried to establish specific ethical frameworks
and procedures. One system, developed in the late 1970s by the American philosopher
Tom Beauchamp and the American theologian James Childress, is known as principlism,
or the Four Principles Approach. In this system ethical decisions pertaining to
biomedicine are made by weighing the importance of four separate elements: respecting
each person’s autonomy and their right to their own decisions and beliefs; the principle of
beneficence, helping people as the primary goal; the related principle of nonmalificence,
refraining from harming people; and justice, distributing burdens and benefits fairly.
Medical ethicists must often weigh these four principles against one another. For
example, all four principles would come into play in the case of a patient who falls into
an irreversible coma without expectation of recovery and who is kept alive by a
mechanical device that artificially maintains basic life functions such as heartbeat and
respiration. The patient’s family members might argue that the patient, if able to make the
decision, would never want to be sustained on a life-support machine. They would argue
from the viewpoint of patient autonomy—that the patient should be disconnected from
the machine and allowed to die with dignity. Doctors and hospital staff, meanwhile,
would likely be concerned with the principles of beneficence and nonmalificence—the
fundamental desire to help the patient or to refrain from harmful actions, such as
terminating life support. Consulting on such a case, the medical ethicist would help
decide which of these conflicting principles should carry the most weight. An ethicist
using principlism might work toward a solution that addresses both sides of the conflict.
Perhaps the family and medical staff could agree to set a time limit during which doctors
would have the opportunity to exhaust every possibility of cure or recovery, thus
promoting beneficence. But at the end of the designated period, doctors would agree to
terminate life support in ultimate accordance with the patient’s autonomy.
Although some medical ethicists follow principlism, others employ a system known as
casuistry, a case-based approach. When faced with a complex bioethical case, casuists
attempt to envision a similar yet clearer case in which virtually anyone could agree on a
solution. By weighing solutions to the hypothetical case, casuists work their way toward
a solution to the real case at hand.
Casuists might confront a case that involves deciding how much to explain to a gravely
ill patient about his or her condition, given that the truth might be so upsetting as to
actually interfere with treatment. In one such case cited by American ethicist Mark
Kuczewski from the Center for the Study of Bioethics at the Medical College of
Wisconsin in Milwaukee, a 55-year-old man was diagnosed with the same form of cancer
that had killed his father. After a surgical procedure to remove the tumor, the patient’s
family members privately told his doctors that if the patient knew the full truth about his
condition, he would be devastated. In weighing this matter, a casuist might envision a
clear-cut case in which a patient explicitly instructs doctors or caregivers not to share any
negative information about prospects for cure or survival. The opposite scenario would be
a case in which the patient clearly wishes to know every bit of diagnostic information,
even if the news is bad. The challenge for the casuist is to determine which scenario, or
paradigm, most closely resembles the dilemma at hand, and, with careful consideration of
the case, try to proceed from the hypothetical to a practical solution. In this particular
case, the cancer patient was informed that his tumor had not been successfully removed
and that more curative measures were called for. His treatments continued. In the end,
however, he died of the disease without ever being told of a terminal diagnosis.
Casuistry and principlism are just two of many bioethical frameworks. Each approach has
its proponents, and volleys of disagreement and debate frequently fly among the various
schools of thought. Yet each approach represents an attempt to deal with thorny,
conflicting issues that commonly arise in the complex and contentious arena of medicine.
These issues can include the rights and needs of the patient, who may, for example,
decide to discontinue treatment for a life-threatening illness, preferring to die with dignity
while still mentally competent to make that choice. There is the obligation of the doctor,
whose duty it is to save and prolong life. There is the hospital or health-care system,
whose administrators must weigh the obligation to sustain life against the often-enormous
expense of modern medical methods. And there is the law, which seeks to protect citizens
from harm while at the same time respecting autonomy. The remainder of this article
discusses some of the most prominent dilemmas and decisions faced by modern medical
ethicists.
A Mortality Issues
Man on Life Support Life support equipment keeps an elderly man alive at a hospital.
Proponents of euthanasia believe that unnecessarily prolonging life in terminally ill
patients causes suffering to the patients and their family members. Many societies now
permit passive euthanasia, which allows physicians to withhold or withdraw life-
sustaining treatment when directed to do so by the patient or an authorized
representative.Photo Researchers, Inc./Jan Halaska
For many centuries death was clearly indicated by the absence of a pulse or signs of
breathing. In the 1960s advances in life-support technology, such as mechanical
respirators and the heart-lung machine, enabled physicians to artificially maintain
function in the heart and lungs, and the clear signs of death became blurred. The resulting
challenge—to forge a new definition of death—was a major spur to the growth of
medical ethics during the 1960s and 1970s.
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POINT/COUNTERPOINT
Physician-Assisted Suicide
Should suffering and dying patients be allowed to end their own lives, with the aid of a
physician? Easing the suffering of terminally ill patients is one way to avoid this difficult
problem, but supporters of physician-assisted suicide argue that this is not always
possible and that patients should have the option of assisted suicide. Opponents charge
that assisted suicide will lead to the active killing of patients. In this Point/Counterpoint
Sidebar, attorney Wesley J. Smith of the International Anti-Euthanasia Task Force
presents his case against physician-assisted suicide. Margaret P. Battin, professor of
philosophy at the University of Utah in Salt Lake City, counters with arguments for
allowing physician-assisted suicide.
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An early effort along these lines was a set of guidelines issued by a committee at the
Harvard University Medical School in Boston, Massachusetts, in 1968. These guidelines
introduced the concept of brain death—defined as an end of all function in the brain and
central nervous system, even in a body sustained by artificial technology. In 1981 a
United States federal advisory group on medical ethics, the President’s Commission for
the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research,
created a guideline for defining death that specifies not only “irreversible cessation of
circulatory and respiratory functions,” but also “irreversible cessation of all functions of
the entire brain.” Within a few years, most states had adopted this definition. Most
European nations, Canada, Australia, and Central and South American nations define
death either as the loss of all independent lung and heart function or the permanent and
irreversible loss of all brain function.
The concept of brain death did not solve the dilemma of patients being sustained by
artificial means—particularly in cases of permanent vegetative states (when a patient has
some brain function but shows no response to the external environment). Using medical
technology, these patients can be kept alive for years, if not decades. A landmark
bioethical and legal case in this area concerned Karen Ann Quinlan, a 21-year-old woman
in 1975 who fell into a permanent vegetative state as a result of ingesting a mixture of
tranquilizers and alcohol. Her parents, carrying out what they believed their daughter's
wishes would be, requested that she be disconnected from her life-support system.
Hospital officials, while sympathetic to the parents’ wishes, would not agree, and a long
court battle followed. Ultimately a New Jersey court agreed with the parents, and Quinlan
was disconnected from her respirator. (Unexpectedly, she began to breathe on her own
and lived another ten years in a nursing home.)
The Quinlan case brought the “right to die” issue into the realm of public discussion. As a
result, in many cases, patients can now make advanced directives, also known as living
wills, directing that their lives not be sustained by artificial means. Other aged or gravely
ill patients have used living wills to specify that if they should suffer heart failure or other
crises while in the hospital, medical staff should make no extraordinary effort to
resuscitate them.
Allowing a patient to die raises one set of ethical issues. Actively helping a patient
achieve death, often referred to as euthanasia, raises still other moral questions. For many
years, medical ethicists have debated whether there is a significant distinction between
the two courses of action. In the United States (with the exception of Oregon), Canada,
and most other nations, euthanasia is illegal. In The Netherlands, the parliament in 1993
established informal guidelines under which physicians would not be prosecuted for
participating in voluntary euthanasia. The Dutch parliament formally legalized voluntary
euthanasia in 2000, provided that it involved the full consent of the patient and agreement
of all concerned medical personnel.
Jack Kevorkian In 1999 retired physician Jack Kevorkian was convicted of second-
degree murder and delivery of a controlled substance after he injected a terminally ill
man with a lethal dosage of medication. He was sentenced to 10 to 25 years in prison.
Kevorkian remains an outspoken advocate of assisted suicide.Corbis/Reuters
Still another controversy related to euthanasia concerns the decision of when, and if, it is
ethically permissible to withhold treatment from a child. This issue came into public
focus with the case of “Baby Doe” in 1982. The newborn infant was diagnosed with
Down Syndrome, a chromosomal disorder that causes moderate to severe developmental
disabilities. The baby also had a hole in the esophagus (the passageway through the
throat) that prevented the baby from feeding. The parents, apparently unwilling to raise a
child with Down Syndrome, refused to consent to the routine surgery that could have
corrected the esophageal defect, and the baby died after six days. The case outraged
many, and officials in the administration of President Ronald Reagan rushed to pass
legislation preventing future similar scenarios.
An issue related to euthanasia is assisted suicide, voluntary suicide with the help of
another person. In the United States this matter has been highly publicized through the
actions of American physician Jack Kevorkian, who in recent years assisted in more than
130 suicides. In 1999, after several previous acquittals in other cases, Kevorkian was
convicted of second-degree murder after administering a lethal injection to a Michigan
man suffering from amyotrophic lateral sclerosis, a progressively debilitating, currently
incurable disease. Kevorkian was sentenced to 10 to 25 years in prison.
In Canada, assisted suicide is illegal. In the United States, the legal situation regarding
assisted suicide has been left largely to the individual states. In the 1997 decision of State
of Washington v. Glucksberg, the Supreme Court of the United States determined that
there is no constitutional right to die with the help of a physician. The Court has also
upheld state laws that ban assisted suicide. However, in 1994 and again in 1997 voters in
the state of Oregon approved a measure allowing physicians to prescribe lethal
medications when requested by a mentally competent adult who is suffering in the final
stages of terminal illness.
All these issues—determining when life has ended and deciding what constitutes a
reasonable quality of life and whether the patient, the health-care system, or the courts
should have ultimate authority in life or death—remain unresolved and continue to
challenge medical ethicists.
B Reproductive Medicine
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HISTORIC HEADLINES
Court Rules Abortion a Right
In one of its most controversial and far-reaching decisions, the United States Supreme
Court in 1973 acknowledged women's constitutional right to an abortion during early
stages of pregnancy. This Los Angeles Times article reports on the court's ruling in Roe v.
Wade, discussing both the majority and dissenting opinions of the justices.
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Contributing to this heated debate has been the development of a variety of drugs that
either prevent or end pregnancies. Emergency contraceptive pills, commonly known as
morning-after pills, use high doses of hormones that can prevent or delay ovulation,
inhibit a sperm from fertilizing an egg, or make the uterine lining inhospitable to a
fertilized egg. If taken by a woman within 72 hours after unprotected sexual intercourse,
these drugs can prevent pregnancy. Doctors have long prescribed high doses of certain
oral contraceptives to patients within three days after unprotected intercourse. More
recently, drugs specifically created for the purpose of emergency contraception have
become available. In some states of the United States, these drugs can be dispensed by a
pharmacist without a doctor's prescription. Abortion rights advocates consider these drugs
a welcome addition to the limited number of effective contraceptive methods, but
abortion opponents strongly disagree. Since there is a small chance that these drugs may
take effect after an egg is fertilized, when abortion opponents believe a human life has
already begun, critics view the drug as just another form of abortion.
Even more controversial is the drug mifepristone, also known as RU-486. Mifepristone is
used to induce abortion in the first seven weeks of pregnancy—when an embryo is less
than 2.5 cm (1 in) in length—without requiring surgery. Developed by a French
pharmaceutical firm, mifepristone was first approved for use in France in 1988; later it
was approved in the United Kingdom, Sweden, and other European countries. The drug
was approved for use in the United States in 2000 under the brand name Mifeprex.
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HISTORIC HEADLINES
First 'Test Tube' Baby Born
The Los Angeles Times published the following article about the birth of the first baby
ever conceived through In Vitro Fertilization (IVF).
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Opponents of abortion contend that the easy availability of this drug increases the chance
that women will choose this method as a form of belated birth control. Abortion rights
advocates note that, since use of the drug is a private matter between a woman and her
physician and requires no surgery, a woman no longer needs to visit an abortion clinic,
which may be targeted by antiabortion protesters. Proponents also cite evidence from
clinical trials of the drug showing that many women preferred the less invasive procedure
to a surgical abortion because it helped them feel more in control of their personal health.
As with other abortion procedures, the cost of mifepristone will not be covered by
Medicaid, the federal health insurance program for low-income individuals and families,
unless the pregnancy results from rape or incest or endangers the life of the mother.
Advocates complain that as a result poor women do not have the same access to
reproductive health care that wealthier women have.
Prenatal Testing Two types of medical tests may be used early in a woman’s pregnancy to
determine if her fetus has a defective gene or a chromosomal abnormality. Both
procedures remove cells surrounding the developing fetus. The cells obtained have the
same genetic makeup as the fetus and can be tested for genetic abnormalities. In
chorionic villus sampling, a doctor removes tissue from the chorionic villi, fingerlike
projections that are part of the developing placenta, between 10 and 12 weeks of
pregnancy. Using ultrasound guidance, the doctor inserts either a needle through the
woman’s abdominal wall or a thin, hollow tube called a catheter through her cervix to
reach the chorionic villi. The doctor suctions out cells using a syringe. Amniocentesis is
usually performed between 15 and 17 weeks of pregnancy. In this procedure, a doctor
uses ultrasound guidance to insert a needle through the abdominal wall into the amniotic
fluid surrounding the fetus. Cells from the amniotic fluid are removed using a syringe.
Both procedures pose a slight risk for the developing fetus, and health professionals
recommend these tests only in cases in which a mother or father has a family history of a
genetic disorder or a known risk for chromosomal abnormalities.© Microsoft
Corporation. All Rights Reserved.
Infertility is also an important area of medical ethics. Many couples unable to have
children turn to fertility-enhancing technologies for help. Artificial insemination, a
method in which doctors introduce semen into the cervix, raised new ethical issues about
how potential parents should choose sperm or egg donors, on what basis and with what
assurances of privacy donors should be recruited, and whether donors are entitled to
parental rights or financial compensation.
In 1978 the birth of the first so-called test-tube baby was an important technological
breakthrough. Doctors used in vitro fertilization (IVF), a method in which fertilization of
the ovum with sperm was conducted in a laboratory and the resulting embryo was
subsequently implanted in the mother's uterus. Soon thereafter, a variety of other IVF
techniques were developed. Not surprisingly, these procedures have raised significant
ethical questions, including some about the safety of the costly technique. To increase the
chance for success, doctors may fertilize and implant more than one embryo into a
woman’s uterus. Some experts have raised concerns about this practice because it
increases the incidence of multiple births, which can create a health risk for the mother
and babies and can place a heavy burden on the parents. When more than one embryo
implants in the uterus, doctors can selectively remove one or more of the embryos to
improve the chances that the others will survive, but this raises additional ethical issues
related to abortion. Questions have also arisen over the fate of the fertilized eggs that are
not implanted and the fate of the human embryos if the couples who created them die,
become incapacitated, or no longer want to have children.
Advances in prenatal diagnostic techniques, such as genetic testing, in the 1960s and
1970s made it possible to test a fetus (and more recently an embryo) for genetic diseases,
such as sickle-cell anemia, and other disorders prior to birth. These techniques, including
chorionic villus sampling and amniocentesis, led to discussions about the morality of
using medicine to end pregnancies based on the predicted disability and quality of life
that the baby might face. An experimental technique known as preimplantation genetic
diagnosis could help couples avoid facing this difficult decision. This technique enables
doctors to analyze the genetic material of embryos created through IVF before they are
implanted in a woman's uterus. Only healthy embryos are then implanted. A related
technique enables doctors to determine the sex of the baby before the embryos are
implanted. Couples at risk of passing on a genetic disorder that affects males may choose
to have only female embryos implanted. However, these prenatal techniques have raised
additional ethical questions about the rights of parents to design their descendants.
Along with developing new methods for ending pregnancies or aiding fertility, modern
medical science has created new means of manipulating the very building blocks of life
itself. These techniques, in the fields of genetic engineering and biotechnology, have
caused much public discussion on medical ethics in recent years.
Since the early 1970s, scientists have refined and improved methods for isolating and
manipulating genes—the basic units of heredity made up of deoxyribonucleic acid
(DNA) that hold the master instructions for the creation of proteins. Proteins act as
molecular laborers, controlling every aspect of cell activity. Specific segments of DNA
can be removed from one organism and inserted into the genes of another species. In this
way the function of selected genes can be deactivated or amplified, changing the actions
of hormones and other proteins and fundamentally altering the characteristics of life
forms.
For some medical ethicists and other observers, such gene manipulation raises serious
ethical and practical concerns. These doubters have asked the following questions: Just
because scientists can perform such wonders, does it follow that they should do so? Are
there unforeseen dangers in altering life at the biochemical level? Is genetic diversity
threatened by such activity?
Correcting Genetic Diseases Gene therapy may someday be able to cure hereditary
diseases, such as hemophilia and cystic fibrosis, which are caused by missing or defective
genes. In one type of gene therapy, genetically engineered viruses are used to insert new,
functioning genes into the cells of people who are unable to produce certain hormones or
proteins necessary for the body to function normally.© Microsoft Corporation. All Rights
Reserved.
Six years later the Court ruled that any life form developed through biotechnology—
excluding humans—could be considered a patentable invention. More recently, as work
has proceeded on mapping the human genome (the entire set of genes found in the
nucleus of each human cell), biotechnology companies have scrambled to file patents on
individual genes that they have “discovered”—whether the companies know the function
of the gene or not. In 2000, for example, a controversy erupted when a biotechnology
company won a patent for a gene involved in the process by which the human
immunodeficiency virus (HIV), the virus that causes acquired immunodeficiency
syndrome (AIDS), infects cells. The patent was granted even though other scientists had
previously made discoveries regarding the gene’s function.
To some medical ethicists, the patenting of genes is troubling. A central argument against
patenting is that competitive ownership of individual genes might prevent scientists from
sharing knowledge. This, of course, would hamper basic biomedical research and the
ongoing search for treatments and cures. President Clinton and British prime minister
Tony Blair addressed this concern early in 2000 when they jointly called for an
agreement for American and British scientists to openly share all information derived
from the sequencing of the human genome (see Human Genome Project).
D Cloning
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SCIENTIFIC DISCOVERIES
Cloning Ethics
The following report is from an April 1997 article in the Encarta Yearbook.
open sidebar
Perhaps no event in biotechnology has caused more uproar and bioethical discussion than
the cloning of Dolly the sheep by Scottish scientists. Dolly was created when the
scientists removed the nucleus from a cell taken from the udder of a six-year-old sheep,
placed it into the egg cell of another sheep from which the nucleus had been removed,
and planted the egg cell within a surrogate mother, which carried Dolly to term. Dolly
was born an identical twin to her six-year-old parent.
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SCIENTIFIC DISCOVERIES
After Dolly: The Future of Cloning
The apparently successful cloning of an adult mammal, announced in 1997 by a team of
Scottish scientists led by Ian Wilmut, raised a number of ethical issues. The cloned
mammal, a sheep named Dolly, seemed to open the theoretical possibility that human
beings could also be cloned. Immediately after Dolly’s existence was announced,
politicians in several countries called for a ban on scientific research into human cloning.
In this article British philosopher Mary Warnock warns against letting the fear of cloning
cripple the future of scientific research into its possibilities.
open sidebar
Dolly’s birth created a sensation in the press and caused a wave of anxiety over the
prospects for cloning humans. President Clinton announced an immediate ban on federal
funding for research related to human cloning. The U.S. National Bioethics Advisory
Committee recommended that federally funded research that had produced Dolly not be
applied to humans. Several other nations have laws prohibiting human cloning, including
Australia, Austria, Denmark, France, Germany, Norway, Slovakia, South Africa, Spain,
Sweden, Switzerland, and the United Kingdom. The Canadian Parliament has yet to pass
a bill that would prohibit human cloning. Early bills failed to pass because they also
restricted other procedures related to reproductive technologies. The debate over the
ethics of creating human clones and the circumstances under which human cloning might
be used remains unsettled.
E Physician-Patient Issues
Since the time of Hippocrates more than 2,000 years ago, a central concern of medical
ethics has been the relationship between physician and patient. Aspects of this
relationship continue to be the source of ethical dilemmas. For example, what is the
extent of the doctor’s duty to a patient if treating the patient places the doctor at risk?
This issue was brought to the forefront in recent years by the advent of the AIDS crisis.
HIV, the virus that causes AIDS, can be spread by contact with blood and other bodily
fluids of an infected person. This poses a potential hazard for doctors and other health-
care workers. In the 1980s, during the early days of the AIDS epidemic, some doctors
refused to treat persons in high-risk groups for AIDS, such as homosexual men and users
of intravenous drugs—even though these patients were not known to be infected with
HIV.
Is there an ethical obligation for doctors to treat patients with communicable and
potentially fatal diseases? In a statement in 1988, the AMA’s Council on Ethical and
Judicial Affairs declared that no patient should suffer discrimination or be denied care
because of infection with HIV. Many states and cities have passed laws barring health-
care discrimination against persons with HIV and AIDS. Nevertheless, the licensing
boards that oversee the practice of medicine in each state have taken varied approaches.
The boards in some states have passed regulations against any refusal to treat persons
with HIV infection; other state boards specify that doctors may refuse to treat such
patients provided that they make a reasonable effort to secure alternate care. In 1998 the
U.S. Supreme Court ruled that denying care to an HIV-infected person violated the
federal Americans with Disabilities Act. AIDS advocates hope that this ruling will protect
the rights of many people with AIDS.
F Human Experimentation
Ethical issues arise not only in the clinical setting of a hospital or doctor’s office, but in
the laboratory as well. A main concern of medical ethicists is monitoring the design of
clinical trials and other experiments involving human subjects. Medical ethicists are
particularly interested in confirming that all the subjects have voluntarily given their
consent and have been fully informed of the nature of the study and its potential
consequences. In this particular area of medical ethics, one infamous period in history has
echoed loudly for more than half a century: the experiments conducted by Nazi doctors
on captive, unwilling human subjects during World War II (1939-1945). Under the guise
of science, thousands of Jews and other prisoners were subjected to grotesque and
horrifying procedures. Some were frozen to death, or slowly and fatally deprived of
oxygen in experiments that simulated the effects of high altitude. Others were
deliberately infected with cholera and other infectious agents or subjected to bizarre
experiments involving transfusions of blood or transplants of organs. Many underwent
sterilization, as Nazi doctors investigated the most efficient means of sterilizing what they
considered inferior populations. In all, these inhumane acts so outraged the world that,
after the war, trials were held in Nürnberg, Germany, and many of the responsible Nazi
physicians were convicted and executed as war criminals.
sidebar
SIDEBAR
An Apology for the Tuskegee Study
The following report is from a May 1997 article in the Encarta Yearbook.
open sidebar
These trials essentially marked the beginning of modern medical ethics. The international
tribunal that prosecuted the Nazi doctors at Nürnberg drew up a list of conditions
necessary to ensure ethical experimentation involving humans. This document, which
came to be called the Nuremberg Code, stressed the importance of voluntary, informed
consent of subjects in well-designed experimental procedures that would aid society
without causing undue suffering or injury.
Clinton Apologizes for Tuskegee Study United States president Bill Clinton and a
survivor of a government-sanctioned experiment on syphilis take part in a formal
ceremony at the White House on May 16, 1997. During the ceremony, Clinton offered a
formal apology to the surviving black men who participated in the experiment. The study,
formally known as the Tuskegee Study of Untreated Syphilis in the Negro Male, was
conducted from 1932 to 1972 and involved 399 black men from rural Alabama who were
infected with syphilis. The U.S. Public Health Service closely monitored and evaluated
the effects of the disease on the study’s participants. In what Clinton described as a
shameful act, throughout the 40-year study the men were never told that they had
syphilis, and they were never offered penicillin to treat the disease. When left untreated,
syphilis can lead to mental illness, paralysis, and death. By the time the study was halted,
more than 120 men had died of syphilis and related complications, at least 40 wives had
been infected, and 19 children had contracted the disease at birth. AP/Wide World
Photos/Greg Gibson
Unfortunately, not all scientists adhered to the Nuremberg Code. In the United States, the
decades following World War II saw several incidents of experiments on unwitting
subjects who had not given informed consent. During the 1940s and 1950s, for example,
hundreds of pregnant women were given a radioactive solution that enabled doctors to
measure the amounts of iron in their blood. In the mid-1950s scientists infected
developmentally disabled children at a New York state hospital with hepatitis in order to
test a vaccine for the disease. In the early 1960s doctors injected cancer cells into the skin
of elderly, debilitated patients in a hospital in Brooklyn, New York, to study the patients’
immune responses. Perhaps the most shameful episode in American medical history was
the federal government’s Tuskegee syphilis experiment. This 40-year study began in 1932
in Tuskegee, Alabama, and tracked the health of approximately 600 African-American
men, two-thirds of whom suffered from the sexually transmitted disease syphilis. Most of
the subjects were poor and illiterate, and the researchers deliberately kept the syphilis
victims uninformed of their condition. Worse yet, the researchers did not treat the disease,
even though a cure for syphilis was readily available during the last 30 years of the study.
Instead, the Public Health Service tracked the men, using them to study the physiological
effects of untreated syphilis. When the press broke the story of the Tuskegee experiments
in 1972, the revelations provided yet another spur to the development of modern
bioethics standards. (In 1997 President Clinton issued a formal apology to the survivors
of the Tuskegee Study and their families.)
Today clinical studies continue to present bioethical challenges. Designing safe clinical
experiments and balancing the need for scientific objectivity against concern for the
human subjects can be a difficult proposition. An ethical dilemma is often presented by
the standard practice of using a placebo in a trial for a new drug or other medical
innovation. A placebo is an inactive substance that is given to some subjects in a study in
order to help researchers judge the real effects of the compound being tested. But is it
ethical in the trial of an AIDS drug, for example, to give a useless placebo to persons
suffering from a potentially fatal condition when other persons in the study are receiving
what may be a beneficial drug? That is just one question that medical ethicists weigh in
the design of experiments involving humans.
Medical Transplants For three decades after the first successful organ transplant was
performed in 1954, medical transplants were rare and often unsuccessful. Thanks to
advances in surgical techniques and the development of drugs that supress organ
rejection, organ transplant operations now are common and generally successful.©
Microsoft Corporation. All Rights Reserved.
For many years medical ethicists have considered the question of whether ethical means
can be found to increase the supply of donor organs. In the early 1980s, for example,
American bioethicist Arthur Caplan of the University of Pennsylvania discussed the
concept of presumed consent—the idea that, barring strenuous objection from family
members, doctors could presume that a person declared brain-dead would be willing to
donate organs to save others. Some Asian nations, as well as some European nations,
including France, Belgium, Austria, and Spain, have such policies. The United States and
Canada later enforced a concept advanced by Caplan of required request—a policy
whereby hospital personnel would be legally required to seek permission from family
members before harvesting organs. The adoption of this policy in the United States and
Canada increased the supply of donated tissues, such as corneas and bone marrow, but
failed to dramatically increase the supply of donor organs.
Current United States and Canadian law bars the sale or purchase of donor organs. The
United States does permit the sale of plasma and other bodily products, such as hair and
sperm. Would financial incentives provide a stimulus for more people to make organs
available? Some ethicists believe so, while others find the idea of marketing organs
ethically objectionable.
Other ethical issues are raised by the practice of xenotransplantation—the use of animal
tissues and organs for human transplant. In 1984 the case of “Baby Fae” stimulated wide
ethical discussion. Doctors transplanted a baboon heart into a newborn girl to replace her
own fatally flawed heart. She died shortly after. Some critics contend that
xenotransplantation poses a danger to human health because of the risk of transferring
deadly animal viruses to the human population. This risk causes bioethicists to question if
such practices are ethical.
In recent years, one of the most promising areas related to transplantation will likely
trigger ethical debate well into the future: the experimental use of tissues from aborted
human fetuses. In one particularly active area of this research, scientists have
experimented for more than a decade with grafting nerve cells from human fetuses into
the brains of patients suffering from Parkinson disease. This disorder, caused by the
mysterious death of brain cells that produce a chemical called dopamine, gradually
causes patients to lose control of their muscles. Many patients who have received fetal
cells show improvement in their symptoms, as the transplanted cells have demonstrated
the capacity to produce dopamine. This research, like all research that depends on human
fetal cells, has also provoked debate. Critics question the ethics of using tissues from
human fetuses for any research purposes.
Ethical uncertainty hangs over a related area of research on human embryonic stem cells.
Human embryos contain stem cells that have the ability to develop into almost any type
of cell. Scientists hope to direct stem cells to produce certain types of human tissue. It is
possible that someday these cells might be used for transplants or for growing new tissue
that can be grafted into the human body. For example, scientists hope that stem cells
might one day be used to replace nerve cells destroyed by spinal injury, or heart muscle
cells damaged during a heart attack. Interest in this field was heightened considerably
when scientists announced in 1998 that they had learned how to grow human embryonic
stem cells in the laboratory.
At present the U.S. government has banned federal funding for human-embryo research,
although private biotechnology companies are exempt from this ban and have been
vigorously pursuing research on embryonic cells. In 2000 the federally funded National
Institutes of Health (NIH) ruled that this ban was not necessary for studies using cells
derived from human embryos, since these cells are not embryos. The NIH established
guidelines enabling federal funds to be used in cases where cells were derived from
frozen embryos that were created for the purposes of fertility treatment but were not
going to be used and were therefore slated for destruction. Other nations currently differ
widely in their policies: France, for example, has forbidden human-embryo research. No
laws in Canada regulate human-embryo research, although scientists or institutions
receiving federal funding must follow strict guidelines governing research on human
embryos. The United Kingdom has laws permitting some forms of human-embryo
research, going so far as to create guidelines allowing scientists to apply cloning
technology to human embryonic cells to create genetically identical cells for a potential
patient.
But the ethical questions remain: Is it morally acceptable to use tissue taken from human
embryos? One recent development might change the nature of this argument. Scientists
discovered in 1999 that stem cells taken from adult mice, and not human embryos, also
display an ability to change their function. So perhaps stem-cell research will continue
with the use of adult mouse cells, effectively resolving the ethical debate over embryonic
cells.
further reading
These sources provide additional information on Medical Ethics.
A variety of issues will face medical ethicists in the 21st century, such as advances in
cloning technology, new knowledge of the human brain, and the wealth of genetic data
from the Human Genome Project. Population changes worldwide will also affect the
course of medicine and will raise issues of medical ethics. By roughly the year 2020, the
number of Americans over the age of 65 is expected to double. This aging of the
population seems certain to increase the demand on the U.S. health-care system—and to
increase health-care costs. Issues concerning equitable access to medical care will likely
come to the fore, as resources for senior citizens compete with other costs that must be
borne by taxpayers. And, with an increase in the number of elderly citizens, ethical
dilemmas surrounding end-of-life issues seem certain to become more prevalent.
Determining the quality of life for aged patients sustained by artificial means, deciding
when treatment has run its course for the aged—these will be issues that medical ethicists
will need to address. As they have for centuries, medical ethicists will continue to ponder,
debate, and advise on the most basic and profound questions of life and death.
Contributed By:
Christopher King
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