Jennifer Doudna (UC Berkeley Professor) – The Science and Ethics of Genome Editing (Feb 2018)

Chapters

Abstract

Navigating the Future of Gene Editing: Transparency, Ethics, and Public Engagement

In the rapidly evolving field of gene editing, the balance between scientific progress and ethical responsibility is more crucial than ever. Radical transparency, civic governance, and respecting indigenous knowledge emerge as key themes in guiding this journey. Advances in gene drive technology, its potential in treating genetic diseases, and ethical considerations take center stage. Equally important is the role of public engagement in science, ensuring equitable access to healthcare, and addressing concerns about altering human nature. This article synthesizes these critical aspects, drawing insights from prominent figures like Jennifer Doudna and Kevin Esvelt, and highlighting the importance of responsible advancement in gene editing technology.

Radical Transparency in Science

Radical transparency in scientific research is not just a method but a necessity, aiming to bridge the gap between science and public trust. This approach, particularly in gene editing, involves openly sharing findings and processes, thus alleviating public anxiety and fostering a transparent research environment. However, some scientists express anxiety about this approach due to the potential for premature criticism and shutdown of their work. Engaging the public in the research process can foster trust in the research outcomes. People tend to be more trusting of research when they are aware of its progress and have opportunities to provide input and suggestions.

Public Dialogue and Disagreements

Public conversations around scientific innovations, especially those with societal impacts like gene editing, are essential. Handling disagreements in these dialogues is a matter of civic governance, necessitating public decision-making to ensure that ethical and societal implications are considered. A challenge arises when disagreements occur between scientists or between scientists and the public. Civic governance is essential in addressing these disagreements, especially when dealing with shared impact technologies like GeneDrive. If communities express opposition to a research project, such as the GeneDrive experiment in Nantucket and Martha’s Vineyard, the researchers must be willing to discontinue the project.

Concerns raised by indigenous communities may not always be scientifically explainable, but they should be taken seriously. Researchers express anxiety about public discussions, particularly regarding controversial topics like embryo editing. They emphasize the importance of engaging in a wide range of discussions to foster public interest in science.

GeneDrive and Civic Governance

The use of GeneDrive technology, which can modify genes across populations, underscores the need for civic governance. Its widespread impact requires public involvement and ethical oversight to navigate its societal and ecological implications. When working with indigenous communities like the Maori, researchers must respect their traditional knowledge and cultural perspectives.

Respecting Indigenous Knowledge

Indigenous perspectives provide invaluable insights into scientific research. Their knowledge, particularly in areas intersecting with gene editing, demands respect and integration, even when it challenges conventional scientific paradigms. The public’s curiosity and interest in science are seen as positive factors in promoting a healthy dialogue. Public engagement allows individuals to consider how scientific advancements may impact their own lives and society.

Public Dialogue Beyond Science

Engaging the public in discussions beyond the scientific community helps cultivate interest and understanding. This engagement allows for diverse perspectives, crucial in assessing the impacts of scientific advancements like gene editing.

Genetic Disease Treatment

Gene editing shows promise in treating genetic diseases, especially those with a single genetic cause. However, multi-genic diseases present greater challenges, necessitating ongoing research and careful ethical consideration. Jennifer Doudna discusses the possibility of using gene editing to correct severe genetic disorders like albinism. In the short term, gene editing is applicable to diseases with a well-defined single genetic cause. Multi-genic diseases, which are more prevalent, will take longer to address using gene editing. Doudna acknowledges that she lacks expertise in the genetics of albinism and cannot provide a definitive answer. In principle, genetic correction for albinism is feasible, but further research is needed. The question arises whether such corrections can be made in adults or children or if they should be done at the germline level.

Clinical trials are already underway for treatments that target genetic disorders in individuals. The advent of gene editing raises ethical discussions about defining disorders, as per the disability activist community.

Ethical Considerations

Germline editing, with its potential to alter human DNA across generations, raises complex ethical questions. The involvement of disability activist communities in these discussions highlights the need to carefully define what constitutes a disorder. Societal views may evolve with technological advancements, suggesting alternative approaches like editing germ cells to mitigate ethical concerns.

Equity in Gene Editing

Gene editing’s accessibility presents opportunities for global advancements in agriculture and healthcare. However, this potential must be balanced with ensuring equitable access, avoiding disparities in healthcare and agricultural benefits. Jennifer Doudna believes that the global impact of gene editing will be first felt in agriculture. Gene editing offers the potential for equitable distribution, as it is relatively easy to access and distributed by a nonprofit organization. Scientists worldwide can adapt gene editing for their purposes, enabling global participation. Biomedical applications of gene editing raise concerns about access to healthcare. The cost of gene editing treatments may initially be high, creating disparities in access. Efforts are underway to develop widely useful applications at lower costs.

Access to Healthcare

The cost of gene editing treatments raises concerns about equitable access. Ensuring that these advancements are not limited to the affluent is crucial for global health equity.

Gene Drives in Climate Change Adaptation

Gene drives could offer solutions for climate change adaptation by spreading beneficial adaptations. However, their use requires careful ethical and ecological consideration. Kevin Esvelt acknowledges the challenge of identifying helpful adaptations for organisms in the face of climate change. CRISPR technology allows for experimentation with different combinations of genetic changes. If successful adaptations are identified, gene drives could potentially spread them rapidly through a population to enhance resilience. The effectiveness of gene drives depends on the strength of selection for the desired adaptation. If selection is weak, most of the population may be lost before the adaptation can spread, limiting the impact of gene drives. In some cases, self-propagating gene drives might be necessary to rapidly spread adaptations.

Prioritizing Applications of Gene Editing Technology

Focusing on healthcare applications, particularly for severe diseases, should be prioritized over enhancements. This approach, advocated by figures like Jennifer Doudna and Kevin Esvelt, emphasizes the need for clear benefits and public support.

Ethical Considerations in Human Germline Editing

Human germline editing, particularly in embryos, presents ethical dilemmas. Societal views may evolve with technological advancements, suggesting alternative approaches like editing germ cells to mitigate ethical concerns.

Promoting Scientific Literacy and Public Engagement

Fostering scientific understanding and public involvement is essential for responsible decision-making in gene editing. Open science initiatives and public input are key to building trust and support.

Addressing Concerns about Genetic Inequality and Changing Human Nature

Concerns about genetic inequality and altering human nature are significant. Open dialogue and public engagement are vital to address these concerns and guide the responsible development of gene editing technologies.

Engaging the Public in Science and Technology

Actively involving the public in shaping the future of science and technology is crucial. Skepticism, while challenging, can lead to a more critical evaluation and better understanding of potential issues. Examples like vaccination highlight the importance of engaging in discussions and evolving public views over time. Personal experiences and relatable applications can transform perspectives and foster acceptance.

Addressing Public Skepticism

Engaging the public, addressing skepticism, and demonstrating the positive impact of gene editing can foster public support and responsible advancement of the technology. Selecting applications that address real-world problems and benefit society is key. Responsible uses of gene editing technology can build trust and support for further advancements.

Conclusion

Acknowledging the contributions of Jennifer Doudna, Kevin Esvelt, and institutions like the Lawn Genome Conference and the University of Melbourne underscores the collaborative effort required in this field.

Acknowledgment of Supporters for the Event

Lawn Genome Conference:

– The Lawn Genome Conference provided support for Jennifer Doudna’s participation in the event.

University of Melbourne:

– The School of Biosciences at the University of Melbourne sponsored Kevin Espel’s attendance at the event.

Gratitude Expressed:

– Appreciation was expressed to Jennifer Doudna and Kevin Espel for their contributions to the event.

Notes by: OracleOfEntropy