Technological advances have made it possible to analyse DNA more quickly and at lower cost, as well as to share genomic data on a much larger scale. These advances support scientific research and medical care by enabling more personalised and effective approaches to healthcare. However, this potential for personalisation that genomics offers also raises important privacy concerns. Our genes contain sensitive information about us and, in some cases, about our relatives. This raises key questions: who should be allowed to access genetic data, and for what purposes? How can we keep people safe from data misuse? And what level of risk are we ready to accept to benefit from personalised medicine? Open discussion is essential to ensure genomic data is used in ways that reflect shared values and bring more benefits than harm.
Genetic information can be highly personal. Depending on the type and amount of data collected, it may be uniquely identifying, deeply intimate, or shared with others, such as family members (in the case of inherited conditions) or specific population groups (for example, in rare diseases or ancestry research). In genomics, privacy refers to a person’s right to control how their personal and sensitive information is used and shared. Protecting privacy helps prevent undesirable exposure or data misuse, such as discrimination or stigmatisation (for more information, see the topic Vulnerability).
Because no one can choose their genetic makeup, privacy protection plays an important role in ensuring that people are not defined solely by what their DNA reveals about them. It supports individual autonomy, as well as psychological and social wellbeing.
Humans share around 99.9% of their genetic material with one another, including with close relatives. The remaining small fraction makes each of us genetically unique. The risk of re-identifying an individual from their genetic data depends on the type and amount of data collected, as well as the safeguards in place.
Individuals can be tested for a limited setlist of genes (see the prenatal testing page for more information) or have their entire genome sequenced, which effectively creates a unique identifier. Data relating to rare genetic variants are often more sensitive than data about variants common in the general population. Moreover, genomic research and medicine rely on large datasets and on linking different types of information (for example, phenotype and genotype; diet/sport behaviors and risk of disease) to better understand health in the benefit of individuals and society as a whole. This increases the value of the data for research and healthcare, but it also increases the risk of re-identification as more data are shared and combined.
Security measures to protect privacy vary depending on the context and purpose of data usage. For example, public health studies often use anonymised data to produce statistics, while clinicians need identifiable data because they need to know their patients to treat them. In each case, protection measures aim to balance risks and benefits.
Despite strong safeguards and high-security standards, no system is completely risk-free. Accidental data leaks or deliberate breaches can still occur, particularly as data is eused more widely. Therefore, laws against discrimination and stigmatisation have been put in place to protect individuals and apply sanctions in case of abuse. But no system is perfect, damage can still be done.
The central challenge lies in balancing the benefits of genomics research and medicine (improved diagnosis, personalised treatment and better public health insights) with the need to respect individual privacy and related rights. Achieving this balance requires transparent consent processes, secure data handling, clear governance about data sharing, and strong protections for individuals and communities. Taking privacy seriously helps ensure that genomics develops in a way that supports trust, autonomy and wellbeing.
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