Ethics of Mandatory Genetic Editing

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A silhouetted figure stands contemplatively between two glowing spheres—one warm orange-red and one cool pale yellow—within a geometric circular frame, surrounded by deep teal-blue space, symbolizing the balance between scientific precision and human complexity in genetic editing ethics.Here's the thing about CRISPR—it's kind of like giving humanity a word processor for DNA, except the stakes are infinitely higher than correcting typos. We're at this peculiar historical moment where the technology exists to prevent cystic fibrosis, sickle cell disease, Huntington's, and countless other conditions before they even begin; but we're frozen in place, wrestling with whether we should just because we can. Note: I reject Fideism entirely and do not include it in this work. I also don't entertain ontological, cosmological, or teleological arguments tainted by myth, legend, or folklore.

The question seems almost absurd at first: Why would anyone want their child to suffer from an inheritable disease when we possess the tools to prevent it? But then you start asking better questions—about who gets to decide, about the definition of disease, about what happens when prevention becomes perfection-seeking, about justice and access and the dignity of disabled bodies. That's where this gets genuinely complicated, and that's why we're here.

The central tension: Should governments mandate or heavily incentivize genetic editing of embryos to eradicate inheritable diseases—even over parental objections? It seems like a humanitarian no-brainer until you realize you're potentially asking the state to commandeer someone's reproductive autonomy for the common good.

The Three Major Arguments Against Mandatory Genetic Editing

Argument One: Reproductive Autonomy Is Sacred Ground

The first objection cuts deep because it hits on something most of us hold dear: the right to make decisions about our own bodies and our own children. Making genetic editing mandatory—or even creating financial/social pressure that amounts to coercion—crosses a line that democracies are generally reluctant to cross. Parents have the authority to make medical decisions for their children; that's not just tradition, it's a foundational principle. Sure, we have limits (we don't let parents deny life-saving vaccines or blood transfusions on religious grounds, sometimes), but mandatory genetic modification feels like a different kind of intervention. It's not treating an existing disease in an existing child; it's redesigning the child before they exist. The argument goes: once we accept state-mandated embryo editing, what stops us from accepting mandates about other traits? Eye color? Intelligence? We're potentially walking ourselves into a biomedical authoritarianism wrapped in the language of health.

Argument Two: The Equity Trap and the Illusion of Access

Here's the second major concern—and it's especially troubling because it's not hypothetical. Genetic editing technology is expensive. If only wealthy people can access it (or if wealthy people get access first), then a mandate that "encourages" or "incentivizes" editing essentially creates a two-tier system: the genetically enhanced and the genetically unenhanced; the children of the privileged and everyone else. This doesn't just feel unfair—it could actively increase inequality. And if governments try to mandate universal access to ensure equity? That's a massive public health expenditure that might crowd out other treatments and preventive care. Plus, there's a subtle dystopian move here: if the government is paying for editing, they suddenly have leverage to define which conditions "count" as worth editing. That's eugenics, basically, just with better PR.

Argument Three: The Slippery Slope and Human Dignity

The third argument is philosophical but visceral: there's something about accepting mandatory genetic editing that seems to fundamentally misunderstand human dignity. Not all disabled people want to be "fixed"—many deaf communities, for instance, don't consider deafness a disease to be eradicated. Mandatory editing assumes that genetic perfection is always better, always more dignified, always more valuable. But what if that's not true? What if there's something important—morally, culturally, humanly—about accepting genetic difference and supporting people as they are? Once we start down the road of saying "these genes are unacceptable," we're making a statement about the worth of the people who currently carry them. That can feel like a betrayal. And where does it end? We've seen throughout history how "health" and "improvement" rhetoric has been weaponized against marginalized groups. Mandatory genetic editing, even with the best intentions, could become another tool for that same erasure.

Where Both Sides Touch the Sacred: Three Moral Examples

Example One: The Parent's Dilemma

Imagine a couple—let's call them Maya and James—who both carry the gene for cystic fibrosis. They know that each of their children has a 25% chance of being born with the disease; they've watched relatives struggle with it. Under a mandatory editing regime, they'd be told: "We can eliminate this. You don't have a choice." The counterargument? "Your refusal to edit means you're choosing to let preventable suffering happen to your child." Here's the moral knot: on one side, there's the genuine ethical imperative not to harm—and choosing to have a child with CF when you could prevent it does seem like a form of harm. On the other side, there's the ethical imperative to respect agency and to question what counts as improvement. Both are moral claims. Both matter.

Example Two: The Disabled Community's Paradox

Consider someone living with a manageable genetic condition—perhaps hereditary deafness—who doesn't experience themselves as suffering and who's embedded in a thriving cultural community built around that condition. That person's moral stance: "Mandatory editing would erase us." But consider the parent of a child with Huntington's disease, which typically manifests in midlife with progressive neurodegeneration and cognitive decline—nothing culturally rich about it, just suffering. That parent's moral stance: "How could I not edit this away if I could?" These aren't one moral camp and one immoral one. They're two different moral truths bumping up against each other. The disabled community deserves dignity and self-determination; suffering children deserve prevention. The moral weight doesn't obviously tip one direction.

Example Three: Justice Between Present and Future

Here's another moral collision: there's an obligation to justice for people right now—the billions living with genetic diseases, the families devastated by inheritable conditions, the child with sickle cell disease who's alive today and suffering. From this perspective, delaying genetic editing technology while we philosophize about autonomy seems almost cruel. But there's also an obligation to people in the future—to ensure we're not building a genetic underclass, not embedding social hierarchies into biology itself, not normalizing state control over reproduction. Which obligation trumps the other? Both are real moral pulls. Both involve vulnerable people whose lives matter profoundly.

Disputing the Objections: A Counter-Argument

Against Argument One: Autonomy Isn't Absolute, and Neither Is Inaction

Let's push back on the reproductive autonomy argument, gently but firmly. Yes, reproductive autonomy matters—it's important, foundational even. But it's also never absolute, and we already know this. Parents can't refuse basic education for their children; they can't withhold life-saving medical treatment based on ideology; they can't expose their kids to preventable diseases. The argument for mandatory genetic editing is actually continuous with these existing limits—it's not a break in principle, just an extension into a new domain.

Here's the crucial move: inaction is also a choice. Choosing not to edit when editing is available and safe is still choosing—it's choosing to let preventable suffering happen. And when that suffering isn't just affecting the choosing parent but a child who will experience it, the moral weight of that choice changes. The autonomy argument assumes that reproductive freedom means freedom to do anything, but most of us actually think it means freedom to make good choices about your child's welfare. If editing prevents disease, then choosing to edit is still consistent with good parenting; it's still an expression of parental love and responsibility.

The slippery slope concern—"once we mandate this, what stops mandates about intelligence or appearance?"—is real but not decisive. We can draw lines. We've done it before. We distinguish between treating disease and enhancement; between preventing genuine suffering and pursuing aesthetic perfection. These distinctions aren't crystal clear, but they're navigable. A mandate could specifically target conditions that cause clear, severe suffering—Huntington's, severe cystic fibrosis, sickle cell disease—without necessarily extending to every genetic variation. The line isn't arbitrary even if it's not mathematically precise.

Against Argument Two: Equity Can Be Built In, Not Used as a Reason to Do Nothing

The equity objection is the strongest one, actually, but it doesn't argue against mandatory editing per se—it argues for doing it responsibly and justly. The problem isn't editing; the problem is that genetic technology in market economies tends to concentrate wealth. But that's a problem we could solve through policy.

Here's a thought experiment: What if genetic editing were fully covered under a universal healthcare system? What if governments did expend the resources to ensure truly equitable access—not just technically available but practically accessible to everyone regardless of income? Then the equity objection doesn't really hold. You're not creating a two-tier system; you're creating one system, available to all. Yes, that costs money. Healthcare does. We already spend enormous public resources treating genetic diseases after they manifest; preventing them upstream is arguably more cost-effective. And more to the point: is the solution to the equity problem really to refuse to use the technology at all? That ensures that everyone stays sick equally, which doesn't sound like a moral victory.

The concern about government power to define disease is legitimate—that is a real risk. But again, it's a risk we can mitigate through democratic process, transparency, and oversight. We don't throw out beneficial technologies because they could be misused; we build safeguards. Genetic editing mandates would presumably be decided by legislatures, subject to public debate, contestable through courts. That's not perfect, but it's not a reason to abandon the entire project.

Against Argument Three: Dignity Isn't Threatened by Ending Suffering; It's Threatened by Refusing to Prevent It

The disability rights argument requires the most gentle reframing, because there is something important to preserve here—namely, the dignity and full personhood of people living with genetic conditions. Nobody wants a world where people with disabilities are devalued or erased. That concern is righteous.

But there's a difference between respecting the dignity of people who have a condition and thinking we shouldn't prevent that condition in future people. The existence of thriving deaf communities—genuinely beautiful, genuinely meaningful—doesn't require that we prevent deafness in future generations if we can do so safely. We can celebrate deaf culture and still think: "And also, congenital deafness often involves other serious health complications, and if we can prevent both safely, we should." Those aren't contradictory.

More broadly: the argument assumes that accepting genetic editing is the same as saying current people with those conditions are worthless. But it's not. We can say: "Huntington's disease causes real suffering; we have the tools to prevent it; we should do so" without saying anything at all about the worth of people currently living with Huntington's disease. We can say: "This condition is worth preventing" and separately, "This person is worth honoring and supporting"—and most of us believe both simultaneously. The fact that we invest in cancer treatment doesn't diminish the dignity of people who have cancer; it's an expression of it.

The slippery slope worry—that genetic editing normalizes eugenics—is real and worth taking seriously. But the answer isn't to avoid the technology; it's to build the right ethical and legal frameworks around it. We do this in medicine constantly: we use powerful tools carefully, with oversight, with humility about their potential for misuse. Genetic editing deserves the same approach.

Conclusion: Progress With Guardrails

So here's what emerges from this conversation: there's a genuine moral case for genetic editing of embryos to prevent serious inheritable diseases. The utilitarian pull is strong (preventing real suffering is good); the autonomy argument isn't ultimately decisive (we limit autonomy for child welfare all the time); the equity objection is real but solvable through policy (not a reason to abandon technology, but to deploy it justly); and the dignity concern, while important, doesn't require us to preserve preventable suffering.

But the objections aren't baseless either. They're pointing toward real risks we need to navigate carefully.

A reasonable synthesis: Governments could—and should—create frameworks that allow and encourage genetic editing to prevent serious, well-defined genetic diseases, with certain guardrails built in from the start. Those guardrails would include robust, equitable access (either through universal healthcare or public funding ensuring no one is priced out); strict limitations on which conditions qualify (ones causing genuine, severe suffering; not ones that are simply inconvenient or unfashionable); genuine democratic input on how we define disease (this isn't a decision for biotech companies or even isolated ethicists, but for communities and legislatures); and strong protections against using genetic technology for enhancement or creating genetic hierarchies.

The mandate doesn't have to be "you must edit"; it could be "editing is available, covered, and recommended for serious diseases—and if you choose not to, you've made a choice we'll respect, but you've made it with full knowledge of what you're refusing." That's less authoritarian while still moving the moral needle.

The future isn't predetermined. We get to decide—together, messily, democratically, with humility about what we don't yet know—whether to deploy one of the most powerful tools we've ever created. But pretending the tool doesn't exist, or refusing to engage with its potential because we're afraid of misuse, seems like we're abandoning children to suffering we could have prevented. That's a cost too—just a quieter one, less visible in the public debates.

We can do better. We can edit genes and protect autonomy, pursue justice and respect diversity, prevent suffering and honor dignity. It won't be simple. But few things worth doing are.

 

 

Appendix: Complete Source List with URLs

30 Bioethical and Academic Sources on Mandatory Genetic Editing

Core Ethical Frameworks & Governance

1. Innovative Genomics Institute - CRISPR & Ethics (2024)

2. Bioethical Issues in Genome Editing by CRISPR-Cas9 Technology

3. What Are the Ethical Concerns of Genome Editing? (2019)

4. Ethical Issues Regarding CRISPR Mediated Genome Editing

5. Genome Editing, Ethics, and Politics

6. Ethical Dimensions and Societal Implications: Ensuring Social Responsibility of CRISPR Technology

7. Harvard Researchers Share Views on Future, Ethics of Gene Editing (2024)

8. CRISPR Ethics: Moral Considerations for Applications of a Powerful Tool

Safety, Technical, and Regulatory Issues

9. CRISPR and Genetic Modification

10. Ethical Issues in Genetic Therapy

Disability Rights & Community Perspectives

11. Disability Rights and Heritable Genome Editing: Resources for Teaching and Learning

12. Faculty Experts Consider Gene Editing Means for Deaf People (2024)

  • Institution: Gallaudet University
  • URL: https://www.gallaudet.edu/news-and-events
  • Focus: Deaf gain concept, disease vs. identity distinction, gene therapy efficacy
  • Note: Gallaudet is the only liberal arts college for deaf/hard of hearing students

13. Gene Therapy: A Threat to the Deaf Community?

14. Why Gene Editing Can Never Eliminate Disability

15. ASAN Comments on the Clinical Use of Human Germline Genome Editing (2019)

  • Organization: Autistic Self Advocacy Network (ASAN)
  • URL: https://autisticadvocacy.org/policy-and-advocacy/
  • Focus: Discrimination concerns, community eradication, underrepresentation in governance
  • Type: Formal policy statement from autism community

16. Ethical Issues in Conducting Research With Deaf Populations

17. The Ethics of Gene Editing Hereditary Deafness

18. Why Deaf People Oppose Using Gene Editing to "Cure" Deafness

19. Illness or Identity? A Disability Rights Scholar Comments on CRISPR Plans

Health Equity & Access Justice

20. CRISPR in Public Health: Health Equity Implications and Role of Community

  • Journal: American Journal of Public Health (AJPH)
  • Year: 2023
  • URL: https://ajph.aphapublications.org/
  • Focus: Minority underrepresentation in research, disparate access to therapies, community-based participatory research (CBPR)

21. CRISPR & Ethics - Justice Considerations

22. Gene Editing for Rare Genetic Diseases: Is An Equitable Future Possible?

23. Justice in CRISPR/Cas9 Research and Clinical Applications

24. Societal and Ethical Impacts of Germline Genome Editing: Securing Human Rights

25. The Racial Politics of Visibility and Equity in Genome-Editing Therapies for Sickle Cell Disease

26. Equity and Access Must Be at Forefront of Innovation

27. Interrogating Equity: A Disability Justice Approach to Genetic Engineering

Prevention, Suffering, and Therapeutic Arguments

28. "Prevention" and Human Gene Editing Governance

29. Bioethics of Somatic Gene Therapy: What Do We Know So Far? (Systematic Review)

  • Source: Taylor & Francis Online
  • Year: 2023
  • URL: https://www.tandfonline.com/
  • Focus: Moral obligation to develop therapy for serious diseases, risk-benefit analysis

30. CRISPR & Ethics - Prevention, Treatment, Enhancement

Quick-Reference Guide by Topic

For Understanding Disability Rights Perspectives

  • Sources: 11, 12, 13, 14, 15, 16, 17, 18, 19, 27
  • Start with: Source 13 (Teresa Blankmeyer Burke's Impact Ethics article) or Source 18 (Discover Magazine piece)

For Understanding Health Equity Concerns

  • Sources: 20, 21, 22, 23, 24, 25, 26
  • Start with: Source 26 (WHO framework) or Source 25 (sickle cell racial justice analysis)

For Understanding Safety and Regulatory Issues

  • Sources: 2, 3, 4, 9, 10, 28
  • Start with: Source 3 (NHGRI official position) or Source 4 (PubMed safety overview)

For Understanding Therapeutic/Prevention Arguments

  • Sources: 28, 29, 30
  • Start with: Source 28 (Juengst on prevention concept) or Source 29 (systematic review)

For Balanced Overviews

  • Sources: 1, 5, 6, 7, 8
  • Start with: Source 1 (IGI CRISPR & Ethics) or Source 5 (AMA Journal politics piece)

Access Notes

  • Peer-reviewed articles: Most accessible through university library systems or ResearchGate.net
  • PubMed/PMC articles: Freely available (marked as open access)
  • Government resources (NHGRI, WHO): All freely available online
  • Journal articles: Check if your institution has access via library proxy
  • Organization resources (Center for Genetics and Society, ASAN, Gallaudet): All freely available online
  • Magazine articles (Discover, Harvard Gazette): Freely available online

Additional Research Resources

If you wish to explore further, these databases and organizations maintain comprehensive collections:

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Pragmatic Journey is Richard (rich) Wermske's life of recovery; a spiritual journey inspired by Buddhism, a career in technology and management with linux, digital security, bpm, and paralegal stuff; augmented with gaming, literature, philosophy, art and music; and compassionate kinship with all things living -- especially cats; and people with whom I share no common language.

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