{"id":4790,"date":"2026-06-26T03:15:47","date_gmt":"2026-06-26T02:15:47","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=4790"},"modified":"2026-06-26T03:15:47","modified_gmt":"2026-06-26T02:15:47","slug":"when-genetic-testing-matters-beyond-treatment-why-not-all-personal-utility-is-equal","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2026\/06\/26\/when-genetic-testing-matters-beyond-treatment-why-not-all-personal-utility-is-equal\/","title":{"rendered":"When genetic testing matters beyond treatment: why not all personal utility is equal"},"content":{"rendered":"

By Dr Johnny Sakr<\/p>\n

Genetic testing is often assessed by asking a familiar question: does it change clinical management? If the answer is yes, the value of the test is relatively easy to explain. It may guide treatment, avoid unnecessary investigations, or improve health outcomes. But many genomic tests produce information that families value even when there is no immediate change in treatment. A result may end years of uncertainty, explain why a child has a condition, help parents plan for school or support services, or inform future reproductive choices.<\/p>\n

This kind of value is often called \u201cpersonal utility\u201d. The idea is important because it recognises that information can matter to patients and families in ways that are not captured by treatment effects alone. But it also creates a problem for publicly funded health technology assessment (HTA). If every personally meaningful benefit is counted in the same way, HTA may end up treating preference, reassurance, justice, and public policy as though they are one category. If personal utility is rejected altogether, HTA may ignore benefits that are ethically and practically significant.<\/p>\n

The problem: personal value is not one thing<\/strong><\/p>\n

My paper argues that not all personal utilities are equal. The point is not that some patient experiences are real and others are not. The point is that different kinds of value require different kinds of justification when public resources are being allocated.<\/p>\n

Some benefits are meaningful but discretionary. A person may value curiosity, explanation, personal meaning, or a general sense that testing was worthwhile. These benefits should not be dismissed as irrational or trivial. But they do not automatically create a justice-based claim on collective funding.<\/p>\n

Other benefits are different. A genomic result may support interests that public institutions already have reason to protect: informed decision-making, fair access to services, or family risk communication. When genetic information helps someone exercise a protected decision-making interest, or removes a barrier to support that is unequally distributed, the value at stake is stronger than mere preference satisfaction.<\/p>\n

A two-tier framework<\/strong><\/p>\n

The article therefore proposes a two-tier framework. The first tier is discretionary personal utility: non-clinical benefits that individuals may reasonably value, but that require additional justification before they influence HTA. The second tier is justice-based personal utility: non-clinical benefits connected to informational rights, equity, or collective goods.<\/p>\n

I also separate out a third category, derivative value. Some claims depend mainly on future scientific or institutional developments. For example, a test result may have \u201coption value\u201d because it could become useful if a treatment is developed later, or \u201chope value\u201d because it gives families a sense that future possibilities may open. These claims can be important, but they are better treated as public-value or innovation-policy arguments rather than immediate patient-indexed personal utility.<\/p>\n

Why this matters in practice<\/strong><\/p>\n

Childhood hearing impairment provides a useful example. Genomic testing may identify the cause of a child\u2019s hearing impairment. The result may give parents an explanation, reduce uncertainty, help with education or support pathways, and inform reproductive planning.<\/p>\n

The framework asks HTA committees to separate these benefits rather than place them all under one label. The intrinsic value of knowing may be discretionary. Anxiety reduction may already be captured through quality-of-life measures, if it is validly measured. Access to education or support services may be justice-relevant if diagnosis functions as a gatekeeper. Reproductive planning may be justice-relevant because it relates to protected decision-making interests.<\/p>\n

This also helps prevent double-counting. If a benefit has already been included as improved quality of life, avoided downstream testing, caregiver effect, or service access, it should not be counted again as personal utility. Personal utility should be residual: it should capture what remains after standard HTA domains have done their proper work.<\/p>\n

What HTA bodies can do now<\/strong><\/p>\n

The framework is not a reimbursement formula. It does not tell committees which tests must be funded. Instead, it gives analysts and policy leaders a clearer way to document their reasoning. They can map each claimed benefit to the right domain, check that it has not already been counted, distinguish discretionary from justice-based claims, and identify derivative claims that should be considered in a separate policy register.<\/p>\n

That kind of transparency matters. Genomic information can be valuable beyond treatment, but public funding decisions still require reasons. A better framework allows HTA to take patient experience seriously without turning every valued experience into the same kind of funding claim. It also helps committees explain when they are making a patient-centred judgment, when they are making a justice-based judgment, and when they are really making a broader public-policy judgment about future innovation.<\/p>\n

The central message is simple: personal utility matters, but it does not all matter in the same way.<\/p>\n

 <\/p>\n

Paper title:<\/strong> Not All Personal Utilities Are Equal: A Two-Tier Normative Framework for Genomic Health Technology Assessment<\/a><\/p>\n

Author<\/strong>: Johnny Sakr<\/p>\n

Affiliations:<\/strong> Prince Sultan University<\/p>\n

Competing interests:<\/strong> None declared.<\/p>\n

Social media accounts of post author(s):<\/strong> https:\/\/www.linkedin.com\/in\/dr-johnny\/<\/p>\n","protected":false},"excerpt":{"rendered":"

By Dr Johnny Sakr Genetic testing is often assessed by asking a familiar question: does it change clinical management? If the answer is yes, the value of the test is relatively easy to explain. It may guide treatment, avoid unnecessary investigations, or improve health outcomes. But many genomic tests produce information that families value even […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":503,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8085,8048,8088],"tags":[],"class_list":["post-4790","post","type-post","status-publish","format-standard","hentry","category-genetic-testing","category-genetics","category-healthcare"],"yoast_head":"\nWhen genetic testing matters beyond treatment: why not all personal utility is equal - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2026\/06\/26\/when-genetic-testing-matters-beyond-treatment-why-not-all-personal-utility-is-equal\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"When genetic testing matters beyond treatment: why not all personal utility is equal - Journal of Medical Ethics blog\" \/>\n<meta property=\"og:description\" content=\"By Dr Johnny Sakr Genetic testing is often assessed by asking a familiar question: does it change clinical management? 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