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Friday, June 30, 2017

Ethical Interventions Means Giving Consumers A Say

Susan Liautaud
Wired Magazine
Originally published June 12, 2017

Here is an excerpt:

Increasingly, the people and companies with the technological or scientific ability to create new products or innovations are de facto making policy decisions that affect human safety and society. But these decisions are often based on the creator’s intent for the product, and they don't always take into account its potential risks and unforeseen uses. What if gene-editing is diverted for terrorist ends? What if human-pig chimeras mate? What if citizens prefer to see birds rather than flying cars when they look out a window? (Apparently, this is a real risk. Uber plans to offer flight-hailing apps by 2020.) What if Echo Look leads to mental health issues for teenagers? Who bears responsibility for the consequences?

Jennifer Doudna and Emmanuelle Charpentier’s landmark 2014 article in Science, “The new frontier of genome engineering with CRISPR-Cas9,” called for a broader discussion among “scientists and society at large” about the technology's responsible use. Other leading scientists have joined the call for caution before the technique is intentionally used to alter the human germ line. The National Academies of Science, Engineering, and Medicine recently issued a report recommending that the ethical framework applied to gene therapy also be used when considering Crispr applications. In effect, the experts ask whether their scientific brilliance should legitimize them as decision-makers for all of us.

Crispr might prevent Huntington’s disease and cure cancer. But should errors occur, it’s hard to predict the outcome or prevent its benign use (by thoughtful and competent people) or misuse (by ill-intentioned actors).

Who should decide how Crispr should be used: Scientists? Regulators? Something in between, such as an academic institution, medical research establishment, or professional/industry association? The public? Which public, given the global impact of the decisions? Are ordinary citizens equipped to make such technologically complex ethical decisions? Who will inform the decision-makers about possible risks and benefits?

The article is here.
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