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1. Legal and Ethical Issues in Human Genetics 2. Confidentiality Tufts OpenCourseWare © 2007 Tufts University Legal and Ethical Issues in Genetics OCW: Genetics (L. Demmer) Page - 1

1. Legal and Ethical Issues in Human Geneticsocw.tufts.edu/data/20/303946.pdf · Legal and Ethical Issues in Human Genetics 2. Confidentiality ... Legal and Ethical Issues in Genetics

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1. Legal and Ethical Issues in Human Genetics

2. Confidentiality

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 1

3. Malpractice Law

4. Genetic Discrimination

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 2

5. Genetic Discrimination

6. Regulation of Human Genome Research

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 3

7. Gene Patents

8. Ethical Challenges in Genetic Testing

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 4

9. Views on Genetic Testing

10. Autonomy

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 5

11. Beneficence / Nonmaleficence

12. Legal Responsibilities of Health Care Providers

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 6

13. Case 3: Familial Adenomatous Polyposis

14. Familial Adenomatous Polyposis

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 7

15. Genetic testing for FAP

16. Case 3: Familial Adenomatous Polyposis

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 8

17. Ethical Principles of Concern:

18. Duty to Warn Third Parties Safer v. Pack (1996)

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 9

19. Duty to Warn Third PartiesSafer v. Pack (1996)

20. Duty to warn third parties, cont.

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 10

21. Duty to warn third parties, cont.

22. Duty to warn third parties, cont.

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 11

23. Ethical Issues to Consider:

24. Genetic Testing in Minors

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 12

25. Genetic Testing in Minors

26. Friedreich Ataxia Case 1

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 13

27. Freidreich Ataxia Case

28. Issues to consider:

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Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 14

29. Case: Hemophilia in the family?

30. Case: Hemophilia in the family?

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 15

31. Ethical Principles to Consider:

32. Case 1: CF Newborn Screening

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Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 16

33. Case 1: CF Newborn Screen

34. Case 1: CF Newborn Screening

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Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 17

35. Possible Explanations for Discrepancy:

36. How to proceed…

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Legal and Ethical Issues in Genetics

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37. Ethical Principles of Concern:

38. Case: Known but unknowing patients with Factor V LeidenDefic...

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Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 19

39. Case: Known but unknowing patients with Factor V LeidenDefic...

40. Ethical Principles to consider:

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 20

41. Case 2: 14 year old female with lack of pubertal development...

42. Past Medical History

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 21

43. Physical Exam

44. Physical Exam, cont.

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Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 22

45. Work-up:

46. Follow-up

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 23

47. Ethical Principles of Concern:

Tufts OpenCourseWare © 2007 Tufts University

Legal and Ethical Issues in Genetics

OCW: Genetics (L. Demmer) Page - 24