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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

DOLCE Workshop

Keith W. Miller

May 21, 2002


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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


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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


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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


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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.


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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.


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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.


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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.


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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.


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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?


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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.


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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?


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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.


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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…