Principles of Bioethics

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Principles of Bioethics

• MOTIVATION BASED ON IDEAS OF RIGHT AND WRONG
• Respect for autonomy (privacy, confidentiality)
• Beneficence (act to improve patient welfare)
• Non-maleficence (do no harm)
• Justice (equality and access)

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Respect for Autonomy
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A persons right to choose freely, based on
adequate information, without coercion
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Respect for Autonomy

• Marys father died at age 45 of Huntingtons
  disease (HD). Her brother currently has started
  to show symptoms of the disease at age 35. Mary
  is now 33 and was referred by her family doctor
  to the genetic counselor for HD genetic testing.
  Mary has no children.
• The genetic counselor explains the risks,
  benefits and limitations of the test. The genetic
  counselor describes the natural history of HD and
  the fact that there are limited treatment options
  and, unfortunately, no cure.

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Respect for Autonomy

• Mary explains the emotional difficulty in
  watching her relatives struggle with the disease
  and that she would only worry when the symptoms
  would start if she knew she had HD.
• The genetic counselor accepts Marys decision and
  validates her choice.

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Beneficence

• Margaret meets with the genetic counselor after
  learning she tested positive for a gene mutation
  that increases her colon cancer risk.
• She is concerned about this cancer risk and feels
  overwhelmed about her future.

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Beneficence
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Beneficence

• The genetic counselor explains the options for
  cancer prevention with frequent screenings and
  awareness.
• Margaret tells the genetic counselor that she is
  comforted by the fact that there are

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Non-maleficence

• Do No Harm
• Sarah is a healthy 7-year old . Her mother was
  recently diagnosed with breast cancer at age 35
  which was found to be caused by a hereditary
  breast cancer gene mutation.
• Now that her treatments are complete, Sarahs
  mother wants to know whether she has passed the
  gene mutation to Sarah.

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Non-maleficence
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Non-maleficence

• The genetic counselors educates Sarah and her
  mother about the hereditary breast cancer
  syndrome.
• She explains that children and adolescents are
  not at risk for developing cancer, rather it
  occurs in adulthood.
• Additionally, Sarah is not capability of
  providing informed consent given her age and
  competency level.

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Non-maleficence

• The genetic counselor asks Sarah what she
  understands about this test and Sarah does not
  know what she would do, if anything, knowing her
  genetic status at this time.
• The genetic counselor explains to Sarah and her
  mother that being aware of Sarahs genetic status
  now, may inflict more worry than empowerment at
  this time.
• The genetic counselor recommends that Sarah have
  testing when she is 18.

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Justice

• Legally and ethically treating all with respect
  and due rights.

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Common Ethical Issues for Families

• Right to know/right not to know
• Sharing of information
• Coercion
• Privacy
• Reproductive decision making
• Testing of minors

ASCO
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Ethical, Legal, and Social Issues in Genetic
Testing Key Points

• Anticipate and discuss potential ethical, legal,
  and social issues before testing
• Encourage family involvement and a shared
  approach to decision making
• Take care to avoid coercion by relatives or
  health care providers
• Stay informed about state and federal laws to
  prevent genetic discrimination and protect privacy

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• Some distinguish ethics, what is right or wrong
  based on REASON, from morals, what is considered
  right or wrong behavior based on SOCIAL CUSTOM.