at UC San DiegoWhen scientists identify a genetic difference, what have they actually learned about the person who carries it? They may discover a cause of disease or a possible treatment. But the finding can also enter decisions about employment, reproduction, and what counts as a “normal” life. For me, my interest in gene editing begins with this movement from biological knowledge to social judgment. We may know how to change a condition without completely understanding the person living with it. What I want to examine is how this partial knowledge gains the capacity to shape another person's life.
Sickle cell screening program shows how this problem developed in practice. In the early 1970s, attention to a neglected disease created opportunities for care and harmful classification. A program could identify a biological difference, but institutions decided what that difference would mean for someone's future. Genetic technology must be assessed partly through the social authority given to its findings. What does a result allow institutions to say, and what does it allow them to do? I read this history alongside present-day interpretations of Zhuangzi “道”, Buddhist arguments about privacy, and relational approaches to biology. These readings help me ask how genetic technology can support care while keeping our knowledge of human flourishing open.
On February 18, 1971, President Richard Nixon sent Congress a message on national health policy. He acknowledged the neglect of sickle cell disease. His proposal would increase research and treatment funding fivefold, to six million dollars (Nixon 1971). This admission matters to me because the disease already existed, but its place on the national agenda still needed changing. In 1972, Congress passed the National Sickle Cell Anemia Control Act. It supported research, screening, counseling, and public education (U.S. Congress 1972). These measures made the disease more visible. The remaining question was what this observability would mean for the people being screened.
The central distinction is between the trait and disease itself. Carrying the trait should not automatically place someone in the same clinical category as a person with the disease. But the Office of Technology Assessment's review found that early programs often failed to explain this distinction or protect confidentiality. Some carriers faced employment discrimination, insurance premiums, or denied coverage (U.S. Congress 1990, 41–43). This is the part I find disturbing. Their bodies had not changed because of the test, but the way an institution understood those bodies could change completely.
Physicians were already questioning these practices at the time. In 1974, Ira Rutkow and Jeffrey Lipton examined medical and social concerns about mass screening and mandatory state programs. They described disagreement about risks associated with the trait under exceptional physiological stress (Rutkow and Lipton 1974). On the other hand, institutions also made decisions during uncertainty. Who decided how much uncertainty was acceptable, when someone else would bear the consequences? What evidence could justify restricting a carrier's opportunities, and who had the authority to interpret it?
The federal law complicates this unequal history. It distinguished carriers from people with the disease, and it also required participation in programs under the act to be voluntary. The act required screening programs to provide confidentiality protections and community representation (U.S. Congress 1972, sec. 2; sec. 3, §§1103–1104). These protections mattered because federal safeguards and mandatory state screening requirements differed. This law recognized a boundary between collecting information and coercing people. However, that recognition could not solve every conflict over how results were used. Protections still depended on the institutions to enforce them.
The mode of classification helps me understand how racial injustice operated in this history: treating a carrier as generally unfit turned a limited biological finding into a judgment about the whole person. Even existing racial inequalities still shaped whose explanations carried credibility and whose opportunities could be restricted. It asks how a judgment about someone's social value could acquire the apparent authority of biological evidence. This is what makes me question the assumption that more biological knowledge necessarily means a better understanding of people. We may know more about a person's genes and still fail to listen to the person.
With gene editing, a biological finding may also become a point of intervention. The distinction between screening, treating an existing patient, and editing an embryo matters here. In December 2023, the FDA approved Casgevy for certain patients with sickle cell disease. The treatment uses CRISPR/Cas9 to modify a patient's blood stem cells. These cells are returned to the body, increasing fetal hemoglobin production. Treatment requires intensive conditioning and follow-up (U.S. Food and Drug Administration 2023). Here, the aim is not only to treat someone who is already living with the disease; a person's needs must remain visible when the discussion turns toward which genes society considers desirable.
I cannot use the history of screening to decide that such treatment is wrong. That would overlook the purposes of the person who is seeking it. Someone may want treatment and still reject the idea that their life was worth less before receiving it. But a wish to relieve pain does not mean accepting every social judgment attached to a diagnosis. Society can support treatment and leave this to people who cannot or choose not to receive it. For me, the difficult question is where desire can become the expectation that a certain difference should disappear. Who gets to define what counts as improvement?
I turn to Daoist and Buddhist arguments with this question in mind. But I do not think they should be grouped under one general label of “Eastern thought.” Richard Kim and Soraj Hongladarom draw on different traditions and address different problems. I use their readings to examine assumptions about genetic technology. This comparison does not explain what caused American screening policy. It gives me another way to question the standards that biological decisions can carry.
Kim's 2019 reading of Zhuangzi finds reasons to resist genetic modification in Daoist accounts of flourishing. He discusses detachment, a heavenly perspective, and spontaneity (Kim 2019). What interests me is how these ideas question our confidence about what makes a life better. A heavenly perspective asks us to step back from familiar human classifications. Detachment questions how fully happiness should depend on one achievement or condition. Spontaneity draws attention to ways of living that cannot be fully planned in advance. Kim asks us to consider the attitude toward life that genetic modification may encourage, beyond whether a procedure is safe.
This concern is persuasive when people define improvement before listening to those they hope to improve. Someone described as “abnormal” may have relationships, abilities, and sources of satisfaction that the label never captures. But I also feel uneasy when acceptance becomes something we ask of another person. It seems too easy to tell someone to accept suffering that we do not have to experience ourselves. I want to question standards of perfection while still taking seriously someone's wish to change what makes their life difficult.
My interest in genetic technology also comes from wanting to understand how life takes shape. Human beings develop knowledge within the world they study. This makes me hesitate to treat every deliberate intervention as something entering nature from outside. Our ability to imagine and make a change also has innate roots. Still, those origins cannot justify everything we do or prove that evolution or the Dao intends a particular future. A change we introduce can also alter the conditions that shape us. I read Kim's spontaneity as a reason to continue responsive to these relationships. We still need evidence about what an intervention actually does.
Hongladarom brings a related question into genetic privacy. His 2009 article asks how Buddhism can defend privacy absent assuming a permanent, substantial self. He provides a pragmatic defense that does not require this metaphysical assumption (Hongladarom 2009). This is useful because it keeps the consequences of information use in view. A person's identity may develop through changing relationships, but exposing their information can still cause real harm. Rejecting an unchanging essence does not make someone available for unlimited use. It also does not make their genetic information a complete description of who they are.
At first, I saw his stress on protection as distinct from my own interest in exploring life. To me, the idea of a constructed self seemed to open a door for research. If identity develops through relationships, I want to understand how those relationships work and what they make possible. I now see protection as part of making that inquiry responsible. Institutions handling information can affect how people understand themselves and how others recognize them. Research enters these relationships too. Consent and privacy matter because the people whose information we study must also live with the consequences of that study.
The screening case brings this back to something concrete. A person's DNA remained unchanged when a test result entered an employment decision, but their opportunities could change. The harm developed through the connection between a biological finding, its interpretation, and institutional authority. Hongladarom helps me explain why protection does not depend on finding a person's “true self” inside a gene. The person who loses an opportunity is still there, whatever account of identity we accept. Genetic information can tell us something useful about that person. I think institutions also need to recognize what it cannot tell them.
This problem of partial explanation also appears within biology. John Dupré and Daniel Nicholson understand organisms as processes sustained through activity. They support this account via metabolic turnover, life cycles, and ecological interdependence (Dupré and Nicholson 2018). What we see as a stable organism depends on ongoing change. The appeal of this account is that stability itself becomes something that life has to maintain. A gene can remain important, but its effects depend on the activities and relationships in which it participates. Identifying the gene gives us a place to begin. We still have to understand what happens around it.
The force of this explanation is real, but I hesitate when it becomes a final answer to what life is. A process description may answer biological questions well and still leave other questions open. Relatively stable genetic arrangements and physical constraints too shape what living processes can do. Genetic intervention may help us understand these constraints by changing a component and observing what follows. The experiment can reveal a causal relationship. But I would still wonder why these forms of organization exist, or whether a more fundamental explanation remains possible. Successfully changing something does not settle everything I want to understand.
Marcello Barbieri's biosemiotics gives me another way to think about this organization. He describes relations among signs, meanings, and the cellular machinery connecting them. His concept of the ribotype identifies machinery linking genetic information with protein production (Barbieri 2008). I am drawn to his attention to the relationships that allow a sequence to function. His use of “meaning,” though, needs care. It is a technical term, not evidence that a cell has conscious intentions or that a person has a feeling of purpose. These coding processes also depend on material components. Reading life through signs does not mean that matter has disappeared from the explanation.
I would not turn these accounts into a simple history in which machines gave way to processes and then signs. They draw attention to different aspects of living organization. They also do not automatically tell us whether gene editing is justified. What they offer me is a reason to look beyond the sequence being edited. Development, cell structure, and environment remain part of the question of how an intervention works. Studying these relationships could make intervention a way to learn more about life. This is closer to what I am searching for, though I still hesitate to call any model the whole answer.
A person seeking treatment cannot wait for these philosophical questions to be settled. A therapy needs evidence about its benefits and burdens, and those offering it must attend to the patient's purposes. On the medical side, medicine does not need metaphysical certainty before it can act. Evidence that an intervention reduces suffering can support treatment. Therefore, my concern is how much more we can ask that evidence to establish. Why should knowing how to change a biological condition also give us the authority to define a person's worth? What is the best pathway for deciding how much authority this evidence should hold over a person's life?
Bibliografía
Barbieri, Marcello. 2008. “Biosemiotics: A New Understanding of Life.” Naturwissenschaften 95: 577–599. Fuente: Barbieri, Marcello. 2008. “Biosemiotics: A New Understanding of Life.” Naturwissenschaften 95: 577–599.
Dupré, John, and Daniel J. Nicholson. 2018. “A Manifesto for a Processual Philosophy of Biology.” In Everything Flows: Towards a Processual Philosophy of Biology, edited by Daniel J. Nicholson and John Dupré, 3–45. Oxford University Press. Fuente: Dupré, John, and Daniel J. Nicholson. 2018. “A Manifesto for a Processual Philosophy of Biology.” In Everything Flows: Towards a Processual Philosophy of Biology, edited by Daniel J. Nicholson and John Dupré, 3–45. Oxford University Press.
Hongladarom, Soraj. 2009. “Privacy, the Individual and Genetic Information: A Buddhist Perspective.” Bioethics 23 (7): 403–412. Fuente: Hongladarom, Soraj. 2009. “Privacy, the Individual and Genetic Information: A Buddhist Perspective.” Bioethics 23 (7): 403–412.
Kim, Richard. 2019. “Daoism, Flourishing, and Gene Editing.” In Human Flourishing in an Age of Gene Editing, edited by Erik Parens and Josephine Johnston, 72–85. Oxford University Press. Fuente: Kim, Richard. 2019. “Daoism, Flourishing, and Gene Editing.” In Human Flourishing in an Age of Gene Editing, edited by Erik Parens and Josephine Johnston, 72–85. Oxford University Press.
Nixon, Richard. 1971. “Special Message to the Congress Proposing a National Health Strategy.” February 18. The American Presidency Project. Fuente: Nixon, Richard. 1971. “Special Message to the Congress Proposing a National Health Strategy.” February 18. The American Presidency Project.
Rutkow, Ira M., and Jeffrey M. Lipton. 1974. “The Sickle Cell Complexity.” JAMA 228 (5): 608–609. Fuente: Rutkow, Ira M., and Jeffrey M. Lipton. 1974. “The Sickle Cell Complexity.” JAMA 228 (5): 608–609.
U.S. Congress. 1972. National Sickle Cell Anemia Control Act. Public Law 92-294, 86 Stat. 136–139. May 16. Fuente: U.S. Congress. 1972. National Sickle Cell Anemia Control Act. Public Law 92-294, 86 Stat. 136–139. May 16.
U.S. Congress, Office of Technology Assessment. 1990. Genetic Monitoring and Screening in the Workplace. OTA-BA-455. Washington, DC: U.S. Government Printing Office. Chapter 3, 41–52. Fuente: U.S. Congress, Office of Technology Assessment. 1990. Genetic Monitoring and Screening in the Workplace. OTA-BA-455. Washington, DC: U.S. Government Printing Office. Chapter 3, 41–52.
U.S. Food and Drug Administration. 2023. “FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease.” December 8. Fuente: U.S. Food and Drug Administration. 2023. “FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease.” December 8.