Altered Inheritance

1. CRISPR Technology Opens Doors to Altered Inheritance

In my view, everyone should have a say in whether modifying our genes and the genes of our descendants is something we should do.

Revolutionary potential. CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) technology has revolutionized genome editing, offering unprecedented precision and efficiency in modifying DNA. This breakthrough raises profound ethical questions about our ability to alter not only individual genomes but also the genetic inheritance of future generations. The technology allows scientists to remove, add, or alter the DNA of living organisms, holding the potential to treat and prevent genetic diseases.

Ethical considerations. The accessibility and simplicity of CRISPR have sparked debates about its responsible use. The question of who gets to decide how this technology is employed is central to the discussion. The potential for misuse and unintended consequences necessitates a broad societal dialogue to determine the ethical boundaries of human genome editing.

Democratizing the debate. The author emphasizes that decisions about modifying our genes and those of our descendants should not be limited to scientific, medical, or political elites. Instead, a broad societal consensus is needed, involving diverse voices and perspectives to ensure that the technology is used for the benefit of all humanity.

2. Somatic vs. Germline Editing: A Generational Divide

With heritable germline genome editing the aim is not to help existing patients but to change a lineage—to alter inheritance.

Two distinct approaches. Human genome editing can be broadly categorized into somatic cell editing and germline editing. Somatic cell editing involves modifying the DNA of non-reproductive cells, with changes that are not passed on to future generations. Germline editing, on the other hand, involves modifying reproductive cells or early-stage embryos, resulting in heritable changes that can be transmitted to offspring.

Differing ethical implications. Somatic cell editing is generally viewed as more ethically acceptable, as it primarily affects the individual receiving the treatment. Germline editing, however, raises significant ethical concerns due to its potential impact on future generations, who cannot consent to the changes. This generational divide necessitates careful consideration of the long-term consequences and potential risks associated with altering the human germline.

Balancing benefits and risks. While germline editing holds the promise of preventing inherited diseases, it also raises concerns about unintended consequences, off-target effects, and the potential for misuse. A thorough assessment of the potential benefits and harms is crucial before considering any clinical applications of heritable genome editing.

3. Designer Babies: From Selection to Genetic Modification

Genuine designer babies are born following an act of intentional design other than selection: they are born of embryos whose mitochondrial or nuclear DNA has been purposefully modified.

The rise of "designer babies." The concept of "designer babies" has evolved from science fiction to a potential reality with the advent of advanced reproductive technologies. Initially, the term referred to babies born through preimplantation genetic diagnosis (PGD), where embryos are selected based on desired traits. However, with the development of genome editing, the possibility of directly modifying an embryo's DNA has emerged, raising new ethical questions.

Mitochondrial and nuclear DNA modification. The first generation of "designer babies" involved mitochondrial DNA modification through techniques like ooplasm transfer and maternal spindle transfer. More recently, the focus has shifted to modifying nuclear DNA using CRISPR technology, as demonstrated by the birth of the first gene-edited babies in China.

Ethical concerns and societal implications. The prospect of creating "designer babies" raises concerns about the commodification of children, the potential for exacerbating social inequalities, and the long-term impact on human diversity. A careful consideration of these ethical and societal implications is essential to ensure that the technology is used responsibly and equitably.

4. Enhancement vs. Treatment: A Shifting Ethical Landscape

The professed distinction between treatment and enhancement is unhelpful, however.

Blurring the lines. The traditional distinction between treatment and enhancement is becoming increasingly blurred with the development of genome editing technologies. While treatment aims to correct a disease or disability, enhancement seeks to improve upon normal human traits or capabilities. However, the line between what constitutes a "normal" trait and what is considered an "enhancement" is often subjective and culturally dependent.

Ethical considerations. The ethical implications of using genome editing for enhancement are complex. Concerns include the potential for creating social inequalities, the risk of unintended consequences, and the impact on human dignity and autonomy. A careful evaluation of the potential benefits and harms is necessary to determine the appropriate boundaries for human genome editing.

Reassessing the framework. The author argues that instead of assuming that treatments are ethically acceptable and enhancements are ethically suspect, we should independently assess the ethical merit of any proposed intervention. This requires considering the potential impact on individual well-being, social justice, and the overall human condition.

5. Navigating the Ethics in the Interim

As we look to the future, we can also easily imagine the use of genome editing technology not merely to reduce the rates of genetic diseases in future generations, but also to transform the human condition.

Living in "interim time." The author introduces the concept of "interim time" to describe the current era, where we are grappling with the ethical implications of emerging technologies like heritable human genome editing. This is a period between the initial imagining of these technologies and their widespread acceptance or authoritative rejection.

Ethical discussions and debates. Since the early days of genetic engineering, ethical discussions have focused on potential harms to children, societal consequences, opportunity costs, informed consent, and family relationships. These discussions have evolved over time, but many of the core concerns remain relevant today.

The need for careful reflection. The author emphasizes the importance of reflecting on the ethical implications of manipulating the human genome, considering the potential benefits and harms to individuals, society, and the gene pool. This requires a nuanced understanding of the science, as well as a careful consideration of our values and priorities.

6. Harms and Wrongs: Beyond a Simple Risk Assessment

The myth that we are our genes (the embrace of genetic determinism) can be seen most obviously in the seemingly endless stream of media reports on the “gene for this” and the “gene for that,” which invariably fail to explain that all traits are multifactorial.

Beyond harm-benefit analyses. Ethical considerations extend beyond simply weighing the potential harms and benefits of heritable human genome editing. Broader societal and cultural concerns must also be addressed, including the potential for increased discrimination, the erosion of social solidarity, and the impact on our understanding of human nature.

The dangers of genetic determinism. The author cautions against the false belief that "our genes R us," which can lead to an oversimplified understanding of human traits and capabilities. Genetic determinism obscures the complex interplay between genes, environment, and individual agency, potentially leading to misguided decisions about genetic modification.

Addressing systemic injustices. The author emphasizes the importance of considering existing social inequalities and power imbalances when evaluating the ethics of heritable human genome editing. The technology should not be used to exacerbate existing disparities or create new forms of discrimination.

7. Slow Science: A Call for Deliberation and Social Justice

Slow science invites scientists and the scientific community to think deeply about how their time and talent might help achieve societal rather than commercial goals—and to assess critically the expectation that scientists develop, produce, advertise, and embrace science and technology as the means to personal and commercial success.

Challenging the culture of speed. The author introduces the concept of "slow science" as a counterpoint to the fast-paced, commercially driven nature of modern scientific research. Slow science emphasizes deliberation, consultation, and a focus on social justice, rather than prioritizing speed and profit.

Prioritizing the common good. Slow science encourages scientists to consider the broader societal implications of their work and to prioritize research that benefits all of humanity. This requires a shift in focus from personal and commercial goals to the common good, which includes equitable access, sustainability, and the well-being of future generations.

Reclaiming science for the public. The author argues that science should be viewed as a public resource and a shared responsibility, rather than a competitive industry driven by individual and corporate interests. This requires a commitment to transparency, collaboration, and democratic decision-making.

8. Scientists and Ethicists: Navigating Policy and Politics

I believe that science collectively, and scientists individually, have a responsibility to serve the common good, and that this responsibility includes contributing to public policy.

The role of science experts. Scientists have a responsibility to contribute to public policy by making scientific information accessible to policymakers and the public. This can involve various roles, from providing objective data to advocating for specific policy options.

Idealized roles for scientists. The author outlines four idealized roles for scientists in policy debates: pure scientist, science analyst, issue advocate, and science diplomat. Each role involves a different level of engagement with policy and a different set of priorities.

The importance of ethical considerations. The author emphasizes the need for scientists to consider the ethical implications of their work and to engage with ethicists and other stakeholders in policy discussions. This requires a willingness to listen to diverse perspectives and to prioritize the common good over personal or professional interests.

9. The Imperative of Public Empowerment

The overt goal of public empowerment is to strengthen conditions for autonomy and agency with an eye to sharing power.

Beyond education and engagement. Public empowerment goes beyond simply educating the public about science or engaging them in dialogue. It involves actively sharing power and decision-making authority with citizens, ensuring that their voices are heard and their values are considered in policy decisions.

Strategies for public empowerment. The author outlines three strategies for public empowerment: democratic deliberation, collective discernment, and decision-making by consensus. Each approach aims to promote inclusivity, transparency, and shared responsibility in policymaking.

Building trust and fostering collaboration. The ultimate goal of public empowerment is to build long-lasting, mutually respectful relationships between scientists and the public. This requires a commitment to open communication, shared decision-making, and a willingness to address systemic injustices.

10. A New Dawn: Shaping Our Shared Future

May our philosophies keep pace with our technologies. May our compassion keep pace with our powers. And, may love, not fear, be the engine of change.

A pivotal moment in human history. We stand at a crossroads, with the power to reshape our species and our future. The choices we make about heritable human genome editing will have profound and lasting consequences for generations to come.

The need for collective action. The author emphasizes the importance of collective action and shared responsibility in shaping our future. This requires a commitment to the common good, a willingness to engage in respectful dialogue, and a dedication to building a more just and equitable world.

A call for hope and compassion. The author concludes with a call for hope and compassion, urging us to use our newfound powers wisely and to let love, not fear, guide our decisions. By embracing these values, we can create a future where all of humanity can flourish.

Last updated: March 31, 2025