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Bio-informatics and Ethics

Bio-informatics and Ethics. DOLCE Workshop Keith W. Miller May 21, 2002. Objectives of This Exercise. The student should be able to write a definition of “bioinformatics.” The student should be able to identify the stakeholders in a case involving genetic information.

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Bio-informatics and Ethics

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  1. Bio-informatics and Ethics DOLCE Workshop Keith W. Miller May 21, 2002

  2. Objectives of This Exercise • The student should be able to write a definition of “bioinformatics.” • The student should be able to identify the stakeholders in a case involving genetic information. • The student should be able to suggest an analogy, including similarities and differences, that involves bioinformatics

  3. Define Before Use • What is Bioinformatics? A Proposed Definition and Overview of the Field. Luscombe, Greenbaum & Gerstein, Methods of Inform. Med. Vol.4 (2001) • Three objectives: Using computers,… • Organize biological data • Develop tools to analyze biological data • Analyze data to get biological insights

  4. What Kinds of Biological Information are Key? • Opinions vary, but much of the work now being done focuses on molecules, genes, and genetics. • “Bioinformatics is an integration of mathematical, statistical and computer methods to analyze biological, biochemical, and biophysical data.” Georgia Tech Dept. of Biology

  5. How is Ethics Relevant? • Technical decisions and human values intertwine. • The information in bioinformatics is inherently personal, often coming from human bodies. • Powerful techniques can massage this information to make scientific inferences and to make money.

  6. Thin Case Study • Your family doctor asks you to participate in a study of genetic diversity. She asks you to donate some skin cells. The only identifying information besides a randomly assigned number is your zipcode.

  7. Think • Primary Question: Will you sign a consent form and give your doctor permission to use your cells? • On your green card, please write your name and list some questions you would like answered before you make this decision.

  8. Pair • Write both your names on the red card. • Please find two questions that seem important to both of you. On the red card, write one question on each side. • For each of these two questions, write down two hypothetical answers, one that would help you say yes, and one that would help you say no.

  9. Share • We will examine your questions soon. • Meanwhile, what people have a stake in your decision about this study? • Think creatively about people who might be affected by your decision, directly or indirectly. I’ll write your ideas on the board.

  10. Examining Your Questions • How could you find an answer to each of your significant questions? • Which stakeholders have access to information relevant to your question? • Are there stakeholders who probably don’t have the answer to your question who SHOULD have that information?

  11. Examples of Assumptions to Shape the Case • ASSUME there is less physical risk to you than scratching your hand with your fingernail. • ASSUME the doctor is getting a nominal fee ($5 per person) for participating in the study.

  12. Sample Example Questions • Who is sponsoring the study? NIH? A university hospital? A drug company? • How much $$ is the doctor getting if you participate? • Is the research focused on certain zipcodes? If so, which neighborhoods, and why?

  13. What? So What? Now What? • WHAT? Bioinformatics often involves human genetic information. • SO WHAT? Human genetic information has powerful potentials. Is it private? • NOW WHAT? Consider the stakeholders in bioinformatics projects. Their human values interact with technical decisions.

  14. Other Ideas Around this Subject • If I shake your hand and can isolate your skin cells, should you be able to keep me from publishing your genetic code (expressed as G,A,T,C symbols)? • Brainstorm analogies: • Genetic information is like… • My genetic code is like…

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