President and Fellows of Harvard College

CRISPR and beyond: Ensuring genetic technologies do not fuel inequity

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Project Summary

As genetic technologies transform healthcare and society, the stakes have never been higher. How can society avoid the mistakes of the past so that everyone can benefit from advances without fear of unethical treatment? Particularly with the advent of CRISPR and related tools for editing a person's DNA, the issues are getting grittier by the day, and lack of information makes people vulnerable. This is why the Personal Genetics Education Project (pgEd) is establishing a consortium of genetics institutions that aims to achieve comprehensive public awareness in as little as five years. Equipped with knowledge, people are better prepared to speak up, ask questions, make informed decisions for themselves and their families, and come together to act in the best interest of their communities. Unless we bridge the gap of awareness and engagement, genetic information will be, in the eyes of many people, yet another instrument of disparity.

Problem Statement

Why now?: Scientists are making available, for public consumption, a host of tools enabling individuals to learn about and even alter their genetic make-up, potentially affecting future generations. As costs decline, genetic tools are being developed with the goal of addressing pressing issues, including climate change, malaria, and food security. Who is impacted?: While a small percentage among the financially secure are integrating personal genetics into their lives and participating in conversations to guide societal decisions, most people do not have a seat at the table. For some, information has not reached them. Others have been excluded because of their circumstances. Still others have purposefully stepped away because their families have suffered abuses by wrongful application of genetic arguments in past decades (for example, forced sterilizations in the era of eugenics and unethical research, such as the Tuskegee Syphilis study). While some argue that such events are of the past, pgEd has observed how lack of conversation revives and expands the distrust those events created. It would be tragic for new genetic tools to fuel race- and culture-based anger already in our communities.Effecting change: pgEd's experience argues the key to comprehensive awareness of genetics will not be increasing public understanding of science. Rather, it will be increasing public trust and confidence - trust that information is shared transparently and confidence that genetics is relevant and within intellectual grasp. Our record shows the most effective way to instill trust and confidence is through conversation, which can mobilize people to act.

Solution Overview

Meaningful contributions: We will launch a series of pgEd outposts in waves to expand awareness and dialogue across the United States and allow international collaboration. Through pgEd's interactive and culturally-responsive educational approach, we will engage people on aspects of genetics they find riveting (e.g., healthcare, ancestry, or social justice), creating space for frank conversations. Importantly, pgEd and our partners will adopt a non-advocacy stance with respect to the use of genetic technologies; explicitly, we will not recruit people into research.Progress: Outposts will implement customized programs effective for engaging their region. Initiatives will include partnering with the vast networks of schools, libraries, community centers, and faith communities to increase our impact; informing policymakers at state and local levels via legislative briefings and campus events; and training future generations of professionals (e.g., in law, business, policy). pgEd will continue our Congressional briefings and collaborations with producers and writers of the film and television industry, reaching tens of millions of viewers in one weekend. Five-year impact: We anticipate broad impact in the US and, increasingly, internationally. For some communities, comprehensive awareness is an achievable goal within five years. In other communities, particularly ones where distrust of individuals outside the community is particularly high, the goal will be to make significant inroads within five years, so many individuals in these communities are more knowledgeable about genetics. Beneficiaries and outcomes: People who are informed are better prepared to act in the best interests of themselves, their families, and their communities.

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Project Funders

  • President & Fellows of Harvard College on behalf of HMS/Genetics 2011 - 2022
  • National Institutes of Health

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