Genetic Data: Access, Privacy and Quality

In one line

Three articles: the person may see their own data, four named parties may not, and whoever holds it must keep it accurate and secure.

In the wording a student can write in an exam: article 13 provides that no one should be denied access to his or her own genetic data or proteomic data unless irretrievably unlinked or unless domestic law limits access in the interest of public health, public order or national security; article 14 requires States to protect the privacy and confidentiality of data linked to an identifiable person, family or, where appropriate, group, and provides that such data should not be disclosed or made accessible to third parties, in particular employers, insurance companies, educational institutions and the family, except for an important public interest reason restrictively provided by law or with prior, free, informed and express consent; and article 15 requires accuracy, reliability, quality and security, and rigour, caution, honesty and integrity in processing and interpretation.

Article 13: access to one's own data

No one should be denied access to his or her own genetic data or proteomic data unless such data are irretrievably unlinked to that person as the identifiable source or unless domestic law limits such access in the interest of public health, public order or national security.

The right and its two exceptions.

The right is to one's own data. It does not extend to a relative's, which is why the brother in the preceding chapter has no claim, and it complements rather than contradicts the right not to be informed in article 10: a person may decline to be told and may later ask, and both are exercises of the same control over information about themselves.

The first exception is factual. Where the data are irretrievably unlinked, there is nothing that can be identified as this person's, so access is impossible rather than refused.

The second exception is legal, and it is narrow: domestic law may limit access in the interest of public health, public order or national security. Note what is absent from that list. Commercial confidentiality is not there; institutional convenience is not there; and the interests of the holder are not there.

Compare section 25 of the Mental Healthcare Act in [The Rights of a Person with Mental Illness], which permits specific information to be withheld from a patient's records where release would cause serious mental harm or harm to others, subject to an application to the Board. The two provisions solve the same problem differently: the Indian statute allows withholding on a clinical ground with a right of appeal, the Declaration allows it only on three stated public grounds and only by law.