Explain how genomic databases can be used to accomplish meaningful research while protecting patient privacy. 

The use of genetic information in health care presents many challenges, one of which is the protection of patient privacy. Given enough genetic information, a precise identification of a person can be made.  Read the Health Informatics: A Systems Perspective Chapter 12 case study on pages 256-258 and address the following:

  • Explain if you agree with the perspective of Sandy or      Grace? Articulate the reasons why.
  • Compare and contrast the differences between the case      of Henrietta Jacks, Jean and the Havasupai?
  • Explain how genomic databases can be used to accomplish      meaningful research while protecting patient privacy.

  • Identify two US genomic institutes that focus on      genomic medicine.
    • Compare and contrast their mission and vision.
    • Compare and contrast their major focus areas of       research.
    • Did the site indicate if patient samples will be       sequenced and the data combined with each participant’s medical record to       allow researchers and research partners to investigate new approaches to       disease prevention, diagnosis and treatment?
    • If asked to consent to your genomic information being       used in research, explain if you would consent or decline? Include your       rationale for consenting or declining.

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