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


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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 9 case study on page 201 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 Lacks, 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.
Grading Rubric Accomplished Emerging Unsatisfactory Content Points Range:62.25 (41.50%) – 75 (50.00%) Responds clearly, thoroughly, and effectively to all aspects of the assignment. All content is accurate and/or supported. Points Range:57 (38.00%) – 61.5 (41.00%) Responds adequately to the assignment but may not be thorough. Points Range:0 (0.00%) – 56.25 (37.50%) Does not respond to the assignment. Focus and Detail Points Range:31.125 (20.75%) – 37.5 (25.00%) There is a clear, well-focused topic. Main ideas are clear and are well supported by detailed and accurate information gathered from scholarly sources. Points Range:28.5 (19.00%) – 30.75 (20.50%) There is a clear, well-focused topic. Main ideas are clear but are not well supported by scholarly sources and detailed information. Points Range:0 (0.00%) – 28.125 (18.75%) The topic and main ideas are not clear. Organization Points Range:18.675 (12.45%) – 22.5 (15.00%) The introduction is inviting, states the main topic, and provides an overview of the paper. Information is relevant and presented in a logical order. The conclusion is strong. Points Range:17.1 (11.40%) – 18.45 (12.30%) The introduction states the main topic and provides an overview of the paper. A conclusion is included. Points Range:0 (0.00%) – 16.875 (11.25%) There is no clear introduction, structure, or conclusion. Mechanics and APA Points Range:12.45 (8.30%) – 15 (10.00%) The assignment consistently follows current APA format and is free of errors in formatting, citation, and references. There are no grammatical, spelling, or punctuation errors. All sources are correctly cited and referenced. Points Range:11.4 (7.60%) – 12.3 (8.20%) The assignment consistently follows current APA format with only isolated and inconsistent mistakes and/or has a few grammatical, spelling, or punctuation errors. Most sources are correctly cited and referenced. Points Range:0 (0.00%) – 11.25 (7.50%) The assignment does not follow current APA format and/or has many grammatical, spelling, or punctuation errors. Many sources are incorrectly cited and referenced or citations and references are missing.

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