# Should recipient parents have access to gamete donors’ raw genomic data? Clinical, legal, and ethical considerations

## TL;DR

The paper explores whether parents who receive donated gametes should have access to the donors' raw genomic data, considering ethical, legal, and clinical factors.

## Contribution

The paper introduces a novel ethical and legal analysis of raw genomic data access for gamete donors and recipient parents.

## Key findings

- Providing raw genomic data to recipient parents raises ethical concerns about informed consent and privacy.
- Clinically mediated access is recommended over unrestricted parental access to genomic data.
- Legal considerations include the need for informed consent and privacy protections for gamete donors.

## Abstract

Genomic sequencing yields vast amounts of data, and the access of patients and research participants to their raw genomic data raises ethical and practical dilemmas.

This paper aims to examine a challenging, underexplored question: whether gamete donors' raw data should be provided to recipient parents.

Using a clinical case, we explore the key ethical, legal, and clinical implications of such access, weighing the advantages, disadvantages, and potential alternatives.

Ethical implications include the feasibility of meaningful informed consent from donors for complex genetic testing, sometimes years after donation; privacy considerations; the type of medical information recipients can or should hold on donors; potential conflicts of interest between the donor and the child; and the potential for raised costs and commercial interests. Clinical implications involve the implementation of systems of storing donors' raw data and devices of re-contacting past donors. Legal aspects include  the informed consent of gametes donors to disclose their raw data to recipient parents and privacy protections, including their right to keep their raw data in confidence.

We advocate a cautious approach that favors clinically mediated access over unrestricted parental access.