Genetics

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Genetics Privacy

• By Karen Gately, Bill Lupin, Laura Kim and Maria
  Bagdasarian

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What Does Genetics and Privacy Mean?

• DNA testing, results can show medical issues.
• As technology grows, it becomes more and more
  advanced.
• Genetics has limitless potential to increase the
  breadth of knowledge.
• find the foundation of our existence.

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Ethical Questions Arise

• From the use and availability of our genetic
  information.
• -Who gets to know what?
• -Are certain genetic indicators enough to judge
  job applicants?
• -Should genetic testing be required?

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EUGENICS

• Definition a social philosophy which advocates
  the improvement of the human race through
  favoring positive traits
• The idea that humans are perfectible or that one
  group is superior to another
• Reproductive discrimination
• Extreme example Hitlers Nazi regime

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• Idiocracy

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Privacy and Confidentiality

• Can genetic information ever really be secure?
• DNA is the ultimate fingerprint
• Unauthorized disclosure violations of privacy
  can cause personal distress and other adverse
  consequences
• Job loss
• Discrimination
• Accessibility issues

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Human Rights and Discrimination

• Genetic Discrimination
• Third parties such as employers, health
  insurers, and government agencies
• Generates new inequalities
• New ways to judge people and create personal
  anguish
• For example..

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Legislation

• Need for federal genetic privacy laws
• Lack of consistency in state laws
• Only 23 states have laws against genetic
  discrimination by insures, and 11 by employers
• Individuals should have ultimate control over how
  their genetic data is used

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FOR INFO PURPOSES ONLY!

• Genetic testing is for informational purposes,
  and is not meant to instill any paranoia in you.
• The theme should be that a well-informed
  consumer is a wise consumer.
• Companies do y-DNA chromosome testing which
  involves only non-coding regions of the
  y-chromosome.
• Therefore, there are NO possibilities of
  discovering genetic diseases!

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DNA separate from Identity

• Specimens are numbered
• Number corresponds to a name
• Only actual tester has sample with a number on
  it, never a name
• Very few people would actually know who the
  customer is and what the results are

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DNA Results Protecting the
Consumer

• DNA results can show medical diseases.
• However, the U.S. Senate endorsed safeguarding
  individual genetic privacy by passing the Genetic
  Information Nondiscrimination Act of 2003.
• This prohibits employees, employment agencies,
  and labor organizations from using individual
  genetic information in hiring, firing, and
  training decisions!

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Protecting the Reseacher Ensuring
Confidentiality

• Particularly important when subject selection is
  made because of certain sensitive or illegal
  characteristic
• Certificates of Confidentiality issued by
  National Institutes of Health to protect the
  privacy of research subjects by protecting
  investigators and institutions from being
  compelled to release information that can be used
  to identify subjects in research project,
  regardless of the source of funding

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For the Larger Good

• Genetic testing is not meant to cause distress,
  but rather prevent distress of potentially larger
  magnitude
• Again, intention and purpose of genetic research
  is prediction and/or early detection of disease,
  as well as prevention
• Allows both consumer and employee to see results
  in potential problems best interest for both
  parties

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For theLARGER Good

• DNA testing may be able to save insurance costs
  by putting people with certain predispositions to
  disease in a separate category
• Might be helpful to people working with someone
  that has a predisposition to a metal illness

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The Big Picture

• It is important for measures to be taken to
  ensure privacy and eliminate sources of
  discrimination, however these concerns regarding
  the publicity and use of info are not significant
  enough to eliminate genetic testing
• Laws and regulations have been and continue to be
  implemented to ensure privacy of genetic info,
  and overall the benefits of research, which in
  the grand scheme of life is meant to help humans
  improve their health and lifestyle, are
  beneficial to our society despite these risks

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Presenting
2025 Edition