Medical Ethics and Patients Rights

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Medical Ethics and Patients Rights

• With Dan Schreiber

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Areas of Interest

• Human research and patients rights
• Prenatal diagnosis
• Genetic screening
• Conflicts of interest and commercial gain
• Science Meets Religion

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Overview Human Testing
Overview Human Testing

• Legal obligations surrounding bodily materials,
  residual diagnostic specimens, and private
  information
• If research doesnt involve living humans you
  still have to uphold the rules why?
• The Charts
• Human research ethics - commentary

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Joe and the New Scopes Trial

• Many upset over an evolutionary monopoly
• Result of 1987 Supreme court ruling
• Intelligent Design
• Equal treatment between evolution v. creationism?

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Joe and the New Scopes Trial

• Possible questions to be answered
• Should faith based education still have an
  influence?
• Science v. Religion, whats the proper balance?
• Outlaw public schools?

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Medical Ethics, Patients Rights, and Religious
Issues

• Prenatal Genetic Diagnosis
• Creating The Perfect Baby
• By Kendall B. Williams, II

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INTRODUCTION

• Background
• Prenatal Genetic Diagnosis
• Case Study
• Explanation
• Ethical / Moral Issues
• Who is affected?
• Conclusions

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BACKGROUND

• Prenatal Genetic Diagnosis
• This is a process used to determine genetic
  defects in an embryo before the birth of a child.
  The first child born through this procedure was
  in 1989 and by 1997 around 30 babies have been
  born through this procedure.
• The process is as follows
• Ideally the first step is that family history is
  researched and genetic testing is performed on
  the interested parties.
• Woman is given drugs
• In-vitro fertilization methods are used to get an
  egg
• Once it has developed into 8 cells, one can be
  extracted and used to develop DNA information
• Molecular analysis ensues to gain inheritance
  information
• Abnormality-free egg is re-implanted and
  hopefully takes

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BACKGROUND (Cont)

• At this time approximately 30 diseases can be
  checked for and diagnosed, including
• Achondroplasia
• Adenosine Deaminase Deficiency
• Alpha-1-Antitrypsin Deficiency
• Alzheimer Disease(AAP gene)
• Beta Thalassemia
• Cystic Fibrosis
• Epidermolysis Bullosa
• Fanconi Anemia
• Gaucher Disease
• Hemophilia A and B
• Huntington Disease
• Muscular Dystrophy
• Myotonic Dystrophy
• Neurofibromatosis Type I

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CASE STUDY

• LARRY SHANNON
• Have a 4-year old girl (Sally) that has Fanconi
  Anemia
• Hole in heart
• No Thumbs
• Impaired kidney problems
• She is not expected to live much longer
• The parents want to have another baby
• Prenatal Genetic Diagnosis (Risks involved)
• Umbilical Cord fluid use for Sally
• Healthy new baby for parents

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CASE STUDY (Cont)

• A team of researchers have been addressed about
  the issue
• A debate ensues about the entire procedure for
  those who have newly entered the group.
• The ethicality of the procedure is discussed
• The researchers differ in views which could
  potentially become a problem during the process.
• Through these researchers actions a precedent
  will be set for further work done in this field.

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ETHICAL / MORAL ISSUES

• Should anyone be allowed to create the
  genetically perfect baby?
• Is it ethically right to give birth to a child
  with the expectation of using them as a possible
  cure for another individual?
• Is it fair that this burden has been placed
  solely on the research team?
• Are we playing god in engaging in this
  procedure, rather than simply diagnosing the
  possible disease?
• Is there a chance that some religious groups and
  extremists could cause a riot if this procedure
  is followed through, therefore setting a
  precedent? If so, what problems could that
  cause?
• What should happen to the in vitro fertilized
  eggs that are not being used?
• Might this procedure be viewed as a contribution
  to increasing abortion rates?

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CONCLUSION

• This issue is extremely controversial among the
  members of society, especially among those
  researchers who are going to engage in such
  activity.
• Just as in most of the other ethically and
  morally questionable issues, there is no black or
  white answer. (All is gray)

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The Genetic 411

• Chase Porter 05

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The Issue

• Will recent advances in the Human Genome Project,
  meant for improving human health, lead to
  discrimination in insurance or employment?

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The Arguments

• Believing that advances in genetic technology
  will lead to discrimination is unfounded based on
  experimental data, leading to public
  misinformation concerning genetic research.

• Believing that advance in genetic technology will
  lead to discrimination is credible based on
  public opinion polls and the history of
  eugenics.

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No Problem Dude

• Laws
• Most states have laws prohibiting genetic
  discrimination
• Federal Genetic Nondiscrimination in Health
  Insurance and Employment Act under consideration
• Such laws do more to harm than help
• Market tests
• Fake people with unhealthy family history or a
  bad genetic test
• No measurable impact
• A problem does not seem to exist

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No Problem Dude

• The nature of insurance
• Premium proportional to mortality risk
• Most premiums low because risk of premature death
  is low
• Fairness same premium vs. proportional premium
• Genetic privacy
• Not viable unless a particular societal ill can
  be pinpointed
• No need to allow insurers to order genetic tests

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No Problem Dude
Conclusion

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Houston, we have a problem

• Public concern
• Recent study 1/3 fearful that genetic info
  could cause loss of health insurance
• Time magazine 75 would not want insurers to
  know their predisposed diseases
• No time to waste
• Medical database hard to remove or prevent
  disclosure
• Nonmedical uses will lead to greater
  distribution of genetic information

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Houston, we have a problem

• History of Eugenics
• U.S. used genetic inferiority to restrict
  immigration
• Scientific justification of Holocaust
• African Americans denied insurance coverage and
  charged higher rates based on genetic mutation
• Northern Santa Fe Railway Company secretly
  tested employees for carpal tunnel genetic
  variation, had to pay 2.2 million to employees

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Houston, we have a problem
We must establish an effective legislative
framework that reduces the threat of harm by
restricting access to genetic information and
enforcing penalties for discrimination.
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Solutions

• Problem, what problem? No solution for a
  nonexistent problem.
• Genetic privacy is necessary and causes no
  significant gain or loss to health insurers or
  employers.

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Your turn

• What do you think?
• Are you fearful for your genetic info?
• Whats the solution?

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In Vitro Fertilization

• Alexander Dunoye

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Background

• Eggs removed from Mother
• Parents' egg and sperm are mixed in a Petri dish
  to fertilize
• AID or artificial insemination by donor sperm
• AIH or artificial insemination by the husband
• Implantation of pre-embryo into uterus tissue

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Interesting Facts

• Low chance of success from IVF
• 25 percent
• Research shows double likelihood of birth defects
• Costs
• IVF procedure 5,000-10,000
• Total medical 10,000-50,000

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Case Study Dilemma

• Betty and Junior married and attempted IVF
• Unsuccessful
• Junior divorces
• Betty wishes to use left over pre-embryos
• Roughly 4 left
• Junior says no

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Ethical Issues Case Study

• No precedent in courts
• To whom does the fertilized egg belong?
• Does Betty have a right to have a baby with
  Juniors sperm if he does not consent?
• Does Junior have a right to say no?
• Should the fertilized eggs be stored at all?

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Possible Solutions

• Disallow the storage of fertilized eggs
• Allow one party to make a decision
• Release only with mutual consent

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Best Solution

• Mutual consent
• Unfair to bring an unwilling party to have a
  child
• Not like forgetting protection
• If Betty really wants child use donor sperm

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Ethical Issues IVF

• What about fertilized cells not used?
• Is it unethical to fertilize eggs in a Petri
  dish?
• Test tube babies