Social and Ethical Concerns of The Genomic Revolution

(Posted on Thursday, December 4, 2025)

Genomic screening is rapidly moving from the margins of medicine into routine care. This creates a moment in which decisions made now will determine whether it prevents disease or amplifies harm. My book, Destiny’s Child No Longer: Rewriting Genetic Fate, explores this same inflection point by showing how the power to read and rewrite genes reshapes lives and clinical practice.

Imagine a future where a simple blood test could map a person’s lifetime health risks, shaping everything from the care they receive to the choices they make for their entire family. The direction this technology takes and how it navigates its promises alongside emerging risks, inequities and ethical dilemmas remains to be seen.

The shift toward universal testing represents more than a technical upgrade. It signals a structural transformation in how privacy, trust and fairness are navigated within medicine. As costs decline and interest in widespread screening accelerates, questions persist about whether infrastructure and social safeguards can adapt. The potential societal impact remains to be fully understood.

How Will Societies Adapt to the Genomic Revolution

National pilot programs demonstrate the technical feasibility of large-scale genomic testing while also highlighting emerging challenges. The rapid expansion of supporting infrastructure—databases, privacy protections and consent protocols—raises questions about whether governance and oversight will adapt effectively. Concerns regarding control, access and the uses of genetic data are increasingly the subject of discussion and scrutiny. The range of possible outcomes remains wide.

As such systems grow rapidly, there is a possibility that processes such as informed consent may become increasingly routine. This potentially diminishes individuals’ depth of engagement and understanding. Decisions regarding one’s own or a child’s genetic data may be made without fully grasping long-term implications. Also, the reversibility of these decisions is often uncertain. Errors or breaches within this infrastructure could also have wide-ranging consequences, including impacts on employment, insurance or personal relationships. How often these scenarios will arise, and to what extent, is not yet clear.

When More Data Means More Doubt

The acceleration of widespread DNA testing is often accompanied by the assumption that greater information will naturally lead to improved health outcomes. However, expanding data availability has been associated with new layers of uncertainty, ambiguous choices and potential for unexpected consequences. For instance, mammography demonstrates how greater test sensitivity can reveal findings of uncertain significance. The result? More tests and more stress.

Today, the overdiagnosis rate for breast cancer screening mammography is approximately 12.6% among women aged 40 and older.  Sometimes this overdiagnosis can lead to unnecessary treatments and higher healthcare bills. This is all without actually saving more lives. Research also demonstrates that false-positive mammography results and overdiagnosis cost the U.S. healthcare system $4 billion annually.

Genomic screening, by analogy, may similarly identify conditions that are untreatable or benign. This could increase financial and psychological strain for individuals and families. In these instances, the balance between benefit and burden may become particularly nuanced. The interpretation of test results in medicine remains a complex endeavor.

Genomics, Inequality and Trust

Genomic screening also intersects with longstanding issues of health inequality. Many reference databases are drawn primarily from populations of European and Asian ancestry, raising concerns about the accuracy of results for individuals from other backgrounds. This dynamic, combined with historical experiences of medical exploitation or exclusion, has the potential to impact trust and participation in genomic initiatives. Whether new technologies will bridge or widen existing disparities is an open question and the subject of ongoing research.

Genetic data could also pose risks of misuse. Insurers, employers or immigration authorities could use genetic information to influence access to services or opportunities. These include raising health insurance premiums, denying jobs or withholding visas based on genetic risk. This isn’t simply alarmist thinking, as there have been real cases where adverse decisions were made based on someone’s Huntington’s disease status or other genetic risks.

The protections offered by regulations like the Genetic Information Nondiscrimination Act are not comprehensive. Key areas such as life, disability and long-term care insurance are often excluded. Storing complete genetic data for extended periods may also increase privacy concerns and raise unresolved questions about consent and control, such as who can access a person’s genetic profile later in life.

Who Decides? Ethics and Autonomy

Universal newborn screening introduces a range of ethical considerations. While traditional public health programs have focused on early identification of treatable conditions, whole-genome sequencing in newborns may reveal risks for late-onset or currently untreatable diseases. The complexity of opting out, as well as parental decision-making regarding uncertain risks, adds further layers to the policy and ethical landscape.

Expanding genomic screening to broader settings, such as newborn care, primary care or workplace health, prompts calls for further research and public dialogue. The trajectory of genomic medicine appears closely linked to how societies balance innovation, oversight and the integration of human values. The significance of our DNA resides in the wisdom and care with which this knowledge is interpreted and integrated into individual and collective life