The Ethics of Genetic Donor Screening: Do We Have the Right to a Secret That Kills?

Level: advanced · Topic: reproductive technology, bioethics, medical law

In the free material, we looked at how the TP53 gene works and why genetic "similarity" between a donor and recipient can create risk for a child. Here we go further — into questions that lawyers, physicians, and philosophers have been unable to resolve for decades: who is responsible when hidden mutations are passed through donor material? And does a child have the right to know what was deliberately kept from them?

How a Broken System Got Built

The first sperm banks appeared in the 1950s, when molecular genetics did not yet exist as a discipline. The double helix was described only in 1953, and the concept of "genetic screening" did not enter clinical practice until the 1970s. Reproductive medicine evolved in a regulatory vacuum, and the norms that took shape then still define practice in many countries today.

The standard protocol for screening a sperm donor in most European countries, until the early 2010s, included:

• blood typing and rhesus factor;
• tests for HIV, hepatitis B and C, syphilis;
• a general physical exam and a family medical history questionnaire;
• a basic semen analysis.

Screening for inherited mutations — carrier status for cystic fibrosis, spinal muscular atrophy, fragile X syndrome — was not standard. In most private clinics, it still is not.

What Expanded Genetic Screening Is — and Why Clinics Avoid It

Modern NGS (Next Generation Sequencing) technology can screen a person for carrier status across hundreds of inherited diseases in a single procedure. The cost of such an analysis has fallen from several thousand dollars a decade ago to several hundred today.

And yet its use in donor programs remains the exception rather than the rule. There are several reasons:

• Regulatory minimalism. The law in most countries requires only basic infectious disease screening from clinics — not expanded genetic panels.
• Economic incentives. Every additional test adds cost. Sperm banks operating in competitive markets are incentivised to do "enough," not "the most possible."
• Legal uncertainty. If expanded screening reveals a mutation in a donor, the clinic faces hard questions: Is it obligated to store that data? To inform the donor? To notify children already born from him?
• The interpretation problem. NGS does not only reveal clear-cut answers. It also surfaces grey zones: Variants of Uncertain Significance (VUS) — gene variants whose clinical meaning is not yet understood. What to do with them is a question the medical community has not uniformly answered.

The Right Not to Know vs. the Right to Know

In 1997, UNESCO adopted the Universal Declaration on the Human Genome and Human Rights. It enshrined the concept of a "right not to know" one's own genetic information. This sounds counterintuitive, but the logic holds: knowledge of an incurable disease can cause psychological harm, and in the absence of any treatment, may offer no practical benefit.

But in the context of donation, third parties enter the picture — the children. And here arises what bioethicists call a "conflict of autonomies":

• The donor has the right to the confidentiality of their genetic information.
• A donor-conceived child has the right to information about their own health.
• Prospective parents have the right to informed choice when using reproductive technology.

These rights can come into direct conflict.

A real precedent: In 2024, a group of anonymous donors in the United Kingdom filed suits against clinics seeking to protect their confidentiality. Simultaneously, several donor-conceived adults at the same clinics were pursuing through the courts the right to obtain the full genetic data of their biological fathers — after being diagnosed with inherited conditions. British courts handled each case individually, noting that no universal resolution exists in current legislation.

The Netherlands: From Karbaat to Reform

Jan Karbaat's case triggered the most sweeping revision of Dutch donation law in thirty years. After a 2023 court ruling obligated a clinic to share the results of posthumous DNA testing with his donor-conceived children, legislators faced a choice: build a system, or leave things as they were.

By 2025, the Netherlands operates one of the strictest donor regulatory regimes in the world:

• All donors are required to undergo expanded genetic screening covering a minimum of 15 inherited conditions.
• Data is held in a centralised registry (the SDKN) for at least 80 years.
• Donor-conceived individuals, upon turning 16, have the right to request a biological parent's medical data when it is relevant to their health.
• The limit of no more than 25 families per donor is enshrined in law.

The Netherlands is still the exception. Most countries are moving in the same direction — but considerably more slowly.

Informed Choice: What You Can Demand Right Now

If you are planning to use donor material, you have tools for protection — even in countries where the law does not oblige clinics to provide full information.

Questions worth asking any clinic:

• What genetic screening protocol do you apply to donors? Ask for a written list. If it's limited to basic infectious disease tests, that is a signal.
• Do you screen for recessive disease carrier status? The minimum contemporary standard includes cystic fibrosis, spinal muscular atrophy, and haemoglobinopathies (sickle cell anaemia, thalassemia).
• Do you use NGS or panel sequencing? Panel tests check a fixed list of conditions. NGS covers the entire exome or genome. The difference is an order of magnitude.
• What is the family limit per donor? If the answer is "we don't set a limit" or is evasive — that is a serious warning sign.
• How long is the donor's genetic data retained? In the child's interest, it should be kept at minimum until that child reaches adulthood.

What Science Says About Anonymity in the Age of Consumer DNA Testing

Legal donor anonymity and practical anonymity are increasingly divergent concepts. A 2018 study published in Science demonstrated that with access to a database of 1.28 million individuals — comparable to what 23andMe or GEDmatch held at the time — virtually any person of European descent can be identified using only their DNA and publicly available demographic data. Today, those databases are far larger.

The practical consequences for donation:

• Donor-conceived individuals who take a consumer DNA test can identify their biological father with high probability — regardless of what their clinic's contract states.
• Half-siblings born from the same donor increasingly find each other through the same databases — and exchange medical information.
• This de facto creates a system of inherited risk disclosure that does not exist de jure: informal, unregulated, and accessible only to those who think to look.

The Core Takeaway

The ethics of genetic screening in donation is not an abstract academic debate. It is a set of concrete decisions being made right now — by clinics choosing between expensive and cheap protocols, by legislators defining standards, and by people walking into a clinic with the hope of a child.

The paradox is that the technology to do far better already exists. Economic, legal, and ethical barriers prevent it from working at full capacity. But that is changing. And the best thing you can do right now is ask the right questions.

— Premium Material —

In the closed Premium module: a 12-point clinic verification checklist; a guide to reading a donor's genetic report independently; and three real court cases from 2023–2025 in which genetic data changed the outcome.

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