Annual Fall Panel Retreat

Agenda | Readings for the Panel | Recommended Readings | Questions

Agenda:

Program on Emerging Technologies
Fall Multidisciplinary Panel Meeting

Redesigning Nature?
Implications of Personalized Biotechnologies

Innovations in synthetic biology and bioinformatics introduce the potential for creating personalized biotechnologies such as gene therapy, customized pharmaceuticals, and embryonic screening/selection/design. These technologies can allow individuals to receive both therapies and enhancements tailored to their genetic makeup and personal preferences.

This workshop will explore both the potential for personalized biotechnologies and the broader societal implications of such technologies with a focus on issues of equity and security.

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Readings for the Panel:

Big Picture

• Woese_review_04_.pdf: A New Biology for a New Century - Carl Woese
• Summary___A_New_Biology_for_a_New_Century.doc
• ferberMicrobesMadetoOrder.pdf: Overview of Synthetic Biology

Personalization

• 2005-04_atlantic_sandel_perfection.pdf: Genetic breakthroughs put humans in a predicament, as they may enable us to manipulate our own nature. Sandel discusses four applications - muscles, memory, height, and sex selection of children - and provides an ethical case against such genetic enhancement. Sandel argues that the problem with striving for genetic perfection is not rooted in unfairness or the erosion of human agency (i.e. problems with perfection per se), but in "the human disposition that it expresses and promotes." By turning our backs on an"openness to the unbidden," we promote hubris, frenzied responsibility, and weakened social solidarity.
• Fierz_2004.pdf: Fierz's most original idea is his framing of six dimensions (including disease evolution, environment, and genes) that build a conceptualized space of personalized medicine. The real benefit of this article, though, is that it provides a broad introduction to personalized medicine. Fierz is dazzled by its "magnificent" possibilities, noting that it actually represents a re-personalization after a century of one-size-fits-all pharamaceuticals. Fierz discusses both the logistical challenges, especially the need for lifelong electronic health records, and the ethical or legal challenges, such as minority protection ("therapeutic orphans"), genetic privacy, and discrimination, that face personalization of medicine.
• Personalized drugs draw biotech dollars - USA Today, Oct 19, 2005

Equity

• EquitypanelArt.summaries.doc: Equity Panel Article Summaries
• TailoredMedicineWhomWillitFitTheEthicsofPatientand DiseaseStratification.pdf: Smart, Andrew, Martin, Paul & Parker, Michael (2004). Tailored Medicine: Whom Will it Fit? The Ethics of Patient and Disease Stratification. Bioethics 18 (4), 322-343.
• Francis, Leslie P., Battin, Margaret P., Jacobson, Jay A., Smith, Charles B. & Botkin, Jeffrey (2005) How Infectious Diseases Got Left Out - and What This Omission Might Have Meant for Bioethics. Bioethics 19 (4), 307-322. doi:10.1111/j.1467-8519.2005.00445.x
• Open Source Biology - Andrew Hessel http://www.mungbeing.com/issue_3.html?page=19&part=4

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Recommended Readings:

• Life Reinvent - Oliver Morton http://www.wired.com/wired/archive/13.01/mit.html

Security

• Biosecurity_Paper.pdf: Taking the Measure of Countermeasures: Leaders' Views on the Nation's Capacity to Develop Biodefense Countermeasures
• bioinformatics_and_security.pdf: Microbiological Threats to Homeland Security: Problems and Related Data That Must Be Considered in Planning a Biodefense Strategy

Additional Readings

• Van Delden, Johannes, Bolt, Ineke, Kalis, Annemarie, Derijks, Jeroen & Leufkens, Hubert (2004). Tailor-Made Pharmacotherapy: Future Developments and Ethical Challenges in the Field of Pharmacogenomics. Bioethics 18 (4), 303-321. doi: 10.1111/j.1467-8519.2004.00399.x
• Daar_Singer_2005.pdf: Daar and Singer offer an interesting first cut into personalized biotech and equity across developed/developing nations. Their key recommendation is that "for the forseeable future, we should not focus on boutique 'personalized' medicine, but on carefully defined differences between populations and ethical ways of using emerging genomics knowledge to develop drugs and improve health."
• President's Council on Bioethics: Created during the Bush administration and its publications seem to have a strong emphasis on discussing alternatives to embryonic stem cell research and justifying administration policy.
• Beyond Therapy: Biotechnology and the Pursuit of Happiness. The President's Council on Bioethics. Washington, D.C., October 2003. In particular, see Chapter 6.

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Questions:

Overarching Questions

• What are the limits to prediction?
• What are the sources/types of uncertainty?
• What methods for adaptation (organizational, regulatory) can reduce the impacts of uncertainties and emergent properties?

Personalization

• What are the one or two most important near (<5 yrs.) and longer (5-10 yrs.) term innovations in the area personalization?
• How do emerging computing technologies impact the development of personalization in biotech?
• What do you see as the number one social issue arising from personalized biotech and why?

Equity

• How will personalized biotech affect international and/or domestic equity?
• What are the incentives/models (e.g. open source) that can bridge the access gap? (e.g roles of private sector, govt., non-profits)
• What is equity when biotech is truly personalized?

Security

• How do you balance access (equity) to personalized biotech with security?
• What controls should be implemented to prevent accidental release/mutation of personalized biotech?
• How can emerging technologies, particularly the intersection of biotech and information technology, be used to enhance defenses and responses to bio-threats?

Summary

• questions and discussion

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