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Genomic Medicine and Informatics
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.