BIOETHICAL CONCERNS

RELATED TO SUSTAINING
QUALITY OF LIFE
 LEARNING OUTCOMES:
• ORGAN TRANSPLANTATION
• CONCERNS ABOUT PROCUREMENT.
• ARTIFICIAL ORGANS.
• MINORITY GROUPS AND ORGAN DONATION.
• CONCERNS ABOUT ALLOCATION.
• CONCERNS ABOUT INDIVIDUAL PROPERTY
RIGHTS.
• XENOTRANSPLANTATION.
• THE HUMAN GENOME PROJECT.
• With the increase in technology,
bioethical concerns have expanded
significantly to include issues related
to maintaining or sustaining the
quality of life through such
procedures as organ transplantation,
xenotransplantation, and stem cell
research.
 Organ Transplantation
• Developments in the area of organ
transplantation have created several issues
deserving consideration.
• Organ transplantation is the process by
which a tissue or organ is removed and
replaced by a corresponding part.
• Transplants can be done using tissue from
one’s own body (eg., skin, bone, or
cartilage); this is called an autograft.
• Transplantation using organs from a
donor’s body is known as homograft or
allograft; it might involve organs such as
the kidney, liver, pancreas, heart, cornea,
or skin of another individual.
• Some organs (eg.:, the heart) must be
transplanted immediately or they will die.
• Others, such as the kidney or skin, can be
stored for short periods.
• According to the United Network for
Organ Sharing (UNOS), there are
more than 80.000 individuals waiting
for an organ transplant;
• 16 Americans die each day while
waiting for an organ to become
available (“Critical data . . . ,” 2002).
• Initially, the replacement for
a diseased organ was • 2022 organ transplants
obtained from a donor who again set annual records;
had died. organ donation from
• More recently, organs have
been received from living deceased donors
donors. continues 12-year
• In 2001, the number of living record-setting trend.
donors reached an all-time
high with 6,485, exceeding • In brief: More than
the 6,081 donations that 42,800 organ transplants
were given after death. performed in 2022, again
• More than 90% of the donors setting annual record.
(5979) gave a kidney, about
500 donated livers, and • Total kidney transplants
about three dozen people exceeded 25,000 for the
gave part of a lung (“Most
transplanted organs . . . ,” first year ever.
2002).
• The supply of organs that can be used for
transplantation has not been able to keep up with the
demand.
• This concern resulted in the Secretary of Health and
Human Services, Tommy Thompson announcing his
“Gift of Life Donation Initiative” in April 2001.
• This initiative had five major elements to encourage
organ donation. Among these was a model donor card,
which included provisions for designating whether all
organs and tissues may be donated, as well as lines for
signatures by two witnesses. This card may be
downloaded from the Internet site
[Link]/[Link] .
Concomitantly, the number of bills in Congress that
address the issue of organ transplant continues to
grow
What organs and tissues can be transplanted?
SOLID TRANSPLANTABLE Other organs:
ORGANS: • Eyes,
• Heart • Ear & nose
• Skin
• Lungs • Bladder
• Liver • Nerves
• Pancreas • Brain and spinal cord
• Skeleton
• Intestines • Gall bladder
• Kidneys • Stomach
• Mouth & tongue
• Muscles
CONCERNS ABOUT PROCUREMENT
• Organ procurement refers to all the activities
involved in obtaining donated organs.
• The idea of consent becomes important when we
talk about organ transplantation and procurement.
It is preferable to have the consent obtained from
the donor.
• This has been facilitated in many states by the
Uniform Anatomical Gift Act, which was drafted by
a committee of the National Conference of the
Commissions of Uniform State Laws in July 1968,
and now by the Model Donor Card.
• People who are willing to donate
parts of their bodies after death may
indicate the desire to do so in a will
or other written documents, or by
carrying a donor’s card.
• Many states also provide a space on
the driver’s license where individuals
can authorize permission for organ
donations.
• The next-of-kin also must grant permission for
the removal of organs after death.
• However, the time factor is crucial; the deaths
are often accidental, and the relatives are
often so emotionally distressed that the
process of obtaining permission may be
uncomfortable.
• Hospitals that receive Medicare funds are
mandated to have required request policies in
place.
• Typically, they have developed a
procurement team that has received
special preparation related to requesting
organ donations.
• These are persons skilled in recognizing the
stress being felt by the family and
experienced in providing information that
will be important to them.
• A growing number of hospitals are
designating a nurse as transplantation
coordinator to facilitate this process.
An interesting and controversial case related to
obtaining necessary material for transplantation
occurred in California.
• An 18-year-old woman, an only child, was diagnosed as
having chronic myelogenous leukemia.
• Although this form of leukemia responds favorably to
bone marrow transplants, no compatible donor could
be found after testing the girl’s family and contacting
the National Marrow Donor Program. In desperation,
the parents decided to have another child with the
hope that the new baby would have genetically
matching tissue type. This required that the father
have a vasectomy reversed and that the mother, age
43, go through another pregnancy, which terminated in
a cesarean section. The baby proved a good match and
was able to provide donor tissue for her sister.
• The case drew considerable attention
as medical ethicists voiced concern
about creating one child to save
another.
• Citing Immanuel KANT (1724-1804),
they argued that the baby was
conceived, not as an end in itself, but
for utilitarian purposes.
• Some medical ethicists argued in favor of
the rights of the individuals involved,
saying that it is not the concern of
biomedical ethicists to intrude into
matters affecting private citizens,
especially when that intrusion approaches
“intruding into a couple’s bedroom”.
• Still others say that striking cases must be
brought before the public because an
obligation to inform society exists.
• Children and young people experience the most
critical need for human organs. This has caused us
to challenge previous decisions.
• A good example is that raised when considering
organs removed from an anencephalic infant. An
anencephalic infant is one born with only enough
brain to support such vital functions as heartbeat
and respiration. It has been estimated that about
60% of these infants are stillborn, and of those
born alive, only about 5% will live more than 3
days. Because anencephaly affects only the brain,
other organs can be used for transplantation if the
infant is kept alive on a respirator until an organ
recipient is located.
• This challenges our definitions of death.
 ARTIFICIAL ORGANS
• Other problems also arise regarding organ
transplantations, especially because more
people need organs than there are organs
available.
• The skill of modern technology has resulted in
the development and implantation of artificial
organs such as the heart.
• Such technologic advances once were viewed as
science fiction. As a result, historic cases such as
the implantation of an artificial heart in Barney
Clark in 1982 received a great deal of publicity.
• Over the years, the use of artificial organs has not
proven effective for long-term use, but artificial
organs have made it possible for individuals to live
with the hope that a transplantable organ will
become available.
• Work and research to develop better organs
continues and recipients are living longer,
although the promise is far less than that with
donated organs.
• The use of artificial joints, heart valves, and other
prostheses continues to grow and to be
successful.
 MINORITY GROUPS AND ORGAN DONATION
• Another issue that has emerged is that of minority differences regarding
organ donation.
• Of the persons awaiting an organ for transplantation, approximately 42%
represent minorities (National MOTTEP, 2002).
• The risk of end-stage renal disease for African Americans and Native
Americans is three to four times higher than for the white population
(Kasiske et al, 1991).
• Although minority groups donate in proportion to their population
distribution, minority organ donations lag behind those from the white
population, with more than 74% of cadaver donations coming from
whites, 12.4% from African Americans, 10% from Hispanics, and 1% from
Asians (National MOTTEP, 2002).
• One of the reasons this presents a concern is that minorities form more
than half of the kidney transplant waiting list. More minority donors are
needed to increase the chances that a well-matched organ will be
available to minorities awaiting transplants.
• How can current definitions of
“brain” death be applied to a
condition in which there is no brain
as we normally recognize it?
 ARTIFICIAL ORGANS
• Other problems also arise regarding organ
transplantations, especially because more people
need organs than there are organs available.
• The skill of modern technology has resulted in
the development and implantation of artificial
organs such as the heart.
• Such technologic advances once were viewed as
science fiction. As a result, historic cases such as
the implantation of an artificial heart in Barney
Clark in 1982 received a great deal of publicity.
• Over the years, the use of artificial organs has
not proven effective for long-term use, but
artificial organs have made it possible for
individuals to live with the hope that a
transplantable organ will become available.
• Work and research to develop better organs
continues and recipients are living longer,
although the promise is far less than that with
donated organs. The use of artificial joints,
heart valves, and other prostheses continues
to grow and to be successful.
 MINORITY GROUPS AND ORGAN DONATION
• Several factors may impact reticence of
minorities to donate organs.
• Some groups have identified religious beliefs
and cultural customs as forbidding organ
donation, although no major Western religion
prohibits organ donation.
• Religious objection often stems from the high
value attached to keeping the body intact
(“Body and soul,” 2002).
• African Americans listed distrust of the medical
community, fear of premature death, and racism
as major barriers.
• Hispanics experienced language barriers and identified
the importance of having the entire extended family
involved in all decision-making regarding donations.
• Puerto Ricans verbalized denial of death and fear of
mutilation of the body as critical factors.
• Barriers to organ donation in Asian American cultures
included the belief that the body should remain intact to
the grave and lack of respect during the handling of the
body after death. Although Native Americans are
theoretically supportive of organ donations, their rate of
donation is low, probably due to lack of knowledge
(Wheeler & Cheung, 1996).
• Although no single approach to organ donation fits all
groups, efforts to decrease barriers to donation are being
instituted.
• The first national program specifically designed to
empower minority communities to become
involved in education activities to increase the
number of minority donors and transplant
recipients has been started. The National Minority
Organ/Tissue Transplant Education Program
(MOTTEP) now has 15 sites across the country
and represents African American, Hispanic/Latino,
Native American, Asian, Pacific Island, and
Alaskan Native populations.
• MOTTEP includes a health promotion and disease
prevention component designed to reduce the
incidence of conditions that can lead to organ
failure. It can be reached at the Web site
[Link]
 Critical Thinking Activity
• Have you signed an organ donation card?
• If not, discuss the reasons why you have
chosen not to do so. If you have, discuss the
reasons why you have.
• Is there a possibility you will change your
mind?
• Why or why not?
• What solutions can you suggest to help the
nation deal with the shortage of organs
needed for transplantation?
 CONCERNS ABOUT ALLOCATION
• How will we determine who receives donated
organs?
• Does “elitism” exist in their distribution—that is,
does a white-collar worker have a better chance
to receive an organ than a blue-collar worker?
• Medicaid and most insurance policies refuse to
pay for the cost of many organ transplants,
although Medicare usually covers the costs of
corneal transplants and kidney transplants.
• Transplants are expensive procedures, often
running into several hundreds of thousands of
dollars.
• If money is required “up front,” as it sometimes
is, where can the needy person procure such
funds?
• Other questions involve both donor and
recipient.
• Should the donor or the donor’s family have the
right to say who will receive the organ?
• How can one “get in line” for an organ, and how
can that need be made known?
• What about selling a healthy organ, such as a
kidney?
• Much has been written about the
problem of selecting recipients for organ
transplantation when the number of
applicants exceeds the number of
available organs.
• Many criteria have been suggested, and
as one might anticipate, these criteria
have arguments both pro and con; the
criterion requiring medical acceptability is
probably the only exception.
• Many transplants require that
compatibility exist in the tissue and
blood type of donor and recipient.
• It would not be logical to give a
much-needed organ to a person
whose body would automatically
reject it.
• The criterion of the recipient’s social
worth is probably one of the hardest to
defend, although it was used in the Pacific
Northwest in the early 1960s to decide
who should be allowed to live by kidney
dialysis.
• Social worth, including past and future
potential, was considered, and even such
factors as church membership and
participation in community endeavors
were considered.
• Some suggest a form of random
selection, once the criterion of medical
acceptability has been met.
• This could be either a natural random
selection of the first-come, first-served
variety, or an artificial selection process
such as a lottery.
• A criticism of this method is that it
removes rational decision-making from
the process.
• We offer no suggestions to solve this
problem but merely demonstrate the
difficulty it presents.
• Even the issue of who should serve on
the decision-making committee can be
touchy.
• The problem of personal biases is a big
concern.
• Today, organ procurement agencies are
located in in many countries.
• These groups carry out many activities
related to organ procurement, including
establishing groups for individuals who
have received donated organs and their
families, publishing newsletters,
developing educational materials,
increasing public awareness of the need for
organs, and serving as a clearinghouse for
organ procurement and matching.
 CONCERNS ABOUT INDIVIDUAL PROPERTY RIGHTS
• Concern for an individual’s property rights
regarding human tissues also has attracted
attention.
• Developments in biotechnology allow profit-
oriented companies to use human tissue to
generate lucrative products, such as drugs,
diagnostic tests, and other medically related
materials.
• The modern legal system has consistently held
that no property rights are attached to the human
body (Swain & Marusyk, 1990).
 Human Body Property Rights
• In 1990, a Seattle man sued the University of California, two
researchers, and two biotechnology and drug companies, because in
1976, he had sought treatment for hairy cell leukemia (a type of
cancer in which the bone marrow makes too many lymphocytes (a
type of white blood cell)) and subsequently had his spleen removed
(which is the standard treatment).
• It was later discovered that the removed spleen contained unique
blood cells that produced a rare blood protein, which then was used
experimentally in the treatment of certain cancers and possibly AIDS.
• The patient was never told that his cells had great potential value,
although he was brought from Seattle to Los Angeles frequently for
blood and other tests. His cells were then developed into a self-
perpetuating cell line to mass-produce the rare blood protein. The
patient’s suit claimed that the defendants wrongfully converted to
their own use his personal property (ie., the blood cells) and that this
was done without his consent.
 XENOTRANSPLANTATION
• Xenotransplantation refers to the practice
of using animal organs, cells, and tissues
for transplantation into human beings.
• Some scientists believe that having a
reliable supply of organs from pigs or other
animals could solve the great shortage
from human donors. It is in the stage of
experimentation around the world.
• Xenotransplantation usually involves organs or
tissues from pigs and nonhuman primates. One
case receiving national publicity was that of an
AIDS patient in San Francisco who received the
transplant of baboon bone marrow to bolster his
weakening immune system.
• Since 1906, many attempts have been made to
transplant whole organs from animals to humans;
none were successful.
• Cases that received particular attention were the
1984 transplant of a baboon heart into Baby Fae
(who died 20 days later) and the 1992 transplant
of a baboon liver into a 35-year-old man (who also
died).
• In addition to the obvious problems associated
with immune system rejection, of particular
concern to some is the possibility of transmitting
serious animal viruses and other microbes, so-
called zoonotic diseases, to people.
• Fano and associates (1999) report more than 20
known, potentially lethal viruses that can be
transmitted from nonhuman primates to
humans. This has prompted the use of pigs as
the “donor” of choice, and has led to attempts
to alter pigs genetically so that tissues would be
more adaptable to transplantation.
• In August 2002, a British
biotechnology company announced
the creation of the first so-called
“double knock-out” pigs, genetically
engineered to lack both copies of a
gene that causes rejection (“Cloned
pigs . . . ,” 2002).
• Concerns in England over the communicability of
bovine spongiform encephalopathy through the
ingestion of meat from ill animals has prompted
the discussion of the potential for all animal organs
to transmit diseases that would appear only years
later.
• Even raising animals in a sterile environment has its
limitations because it is now being discovered that
some diseases are transmitted from mother to
fetus in utero.
• Some groups in England are urging the
xenotransplantation project be abandoned and
that research into xenotransplantation be stopped
because of the social cost and because of on-going
suffering of animals inherent in such an approach.
• In September 1996, representatives from the Food
and Drug Administration (FDA), the Centers for
Disease Control and Prevention (CDC), and the
Institutes of Health (NIH) developed the guidelines.
The guidelines urged that patients and their families
be fully informed of potential risks, and further
required that any planned procedure be thoroughly
screened and approved by a series of local
institutional review boards, and by the FDA.
• The recommendations also require that transplants
take place at a clinical center associated with an
accredited biology and microbiology laboratory.
 Organ transplantation raises several
ethical issues, including:
1. Donor Consent:
• Ensuring that the donor has given informed
consent and that the donation is voluntary is
critical.
• Consent must be obtained in a way that is free
of coercion or pressure and without any
payment or other incentives that could
influence the decision to donate.
 2. Fair Allocation:
• The allocation of organs to patients should be
based on objective criteria such as medical
urgency, potential for success, and duration on
the waiting list.
• This process should be fair and transparent to
ensure that patients receive organs based on
their medical needs and not on their social
status or financial resources.
 3. Organ Trafficking:
• There is a risk that organs may be obtained
through illegal means, such as organ
trafficking, which involves the buying and
selling of organs for profit.
• Organ trafficking violates ethical principles
and is a criminal offense.
 4. Living Donor Risks:
• Living donor transplantation raises ethical
issues related to the risks and benefits of the
donation process.
• The donor's informed consent must be
obtained, and the risks and benefits of the
procedure must be explained to them.
• It is important to ensure that donors are not
coerced into donating and that their long-
term health is protected.
 5. End-of-Life Issues:
• Organ donation often occurs after a patient
has died or is brain dead, and ethical
considerations arise regarding the definition
of death and the timing of organ retrieval.
• The decision to withdraw life support and
donate organs must be carefully considered
and should be made in accordance with the
patient's wishes and ethical principles.
 CONCLUDING
Organ transplantation raises several bioethical
issues, including:
• Autonomy: The principle of autonomy requires
that individuals have the right to make decisions
about their own bodies, including whether or not
to donate their organs. Therefore, ensuring that
donor consent is voluntary, informed, and free of
coercion is critical.
• Beneficence and Non-maleficence: The principle
of beneficence requires that physicians act in the
best interests of their patients. Organ
transplantation is an intervention that can improve
the health and quality of life of patients, but it
also carries risks, such as the risk of infection or
rejection. Physicians must carefully consider the
risks and benefits of transplantation and ensure
that patients receive appropriate care before and
after the procedure.
• Justice: The principle of justice requires that
the benefits and burdens of organ
transplantation be distributed fairly. The
allocation of organs to patients should be
based on objective criteria such as medical
urgency, potential for success, and duration on
the waiting list. This process should be fair and
transparent to ensure that patients receive
organs based on their medical needs and not on
their social status or financial resources.
• Dignity: The principle of dignity requires that
individuals be treated with respect and that
their human rights be protected.
• This includes respecting the dignity of
deceased donors and ensuring that their bodies
are treated with respect and dignity during the
organ retrieval process.
• End-of-Life Care: The process of organ
donation often occurs after a patient has died
or is brain dead.
• The decision to withdraw life support and
donate organs must be carefully considered
and should be made in accordance with the
patient's wishes and ethical principles.
 Bibliography
• Taher L. S. Moral and Ethical Issues in Liver and
Kidney Transplantation. Saudi J Kidney Dis Transpl
[serial online] 2005;16:375-82.
[Link]
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• G. R. Dunstan The ethics of organ donation
/Department of Theology, University of Exeter,
Exeter, UK
• Ethics of Organ Transplantation. Center for
Bioethics. pdf