Informed Consent: DNA’s Essential Ethical Underpinning

This webinar, presented by genealogist and legal expert Judy Russell, explores the ethical foundations of using DNA in family history research. With the increasing availability of consumer DNA testing, genealogists frequently encounter situations involving privacy, consent, and the handling of sensitive information. The session explains why informed consent is essential at every step of DNA-related research—whether encouraging someone to test, managing another person’s results, or sharing genetic findings more broadly. By outlining both the benefits and the potential risks of DNA testing, the webinar helps genealogists ensure that their work is conducted responsibly, respectfully, and in accordance with widely accepted professional standards.

Informed consent is shown to be more than a polite request—it is a clear, affirmative agreement based on full understanding of what the test may reveal, who will have access to the results, and how they may be used. The webinar highlights the relevant genealogical codes of ethics, explains the importance of establishing permissions in writing, and illustrates how unexpected discoveries—from unknown biological relatives to genetic health indicators—may affect individuals and families. Practical tools, such as customizable consent forms created by leaders in the field, provide viewers with actionable guidance to apply in their own research.

Key Takeaways

• Informed consent is fundamental. Ethical DNA research depends on clearly explaining the purpose of testing, potential outcomes, privacy considerations, and how the data will be shared. Consent must be active, not assumed, and should be documented.

• Unexpected results are common. DNA testing may reveal unknown relatives, revised family structures, or health-related information. Genealogists have a responsibility to approach such findings with sensitivity and caution, placing the well-being of living individuals first.

• Written agreements protect everyone. Using written consent or beneficiary forms ensures clarity regarding who may access and manage DNA results, including after the test taker’s death. This prevents loss of access and helps maintain ethical stewardship of the data.

To gain deeper insight into how to apply these practices in real research situations, viewing the full webinar is strongly encouraged. The presentation provides clear examples, recommended language for discussing consent, and guidance on handling ethically sensitive discoveries. Viewers will also find additional resources in the accompanying syllabus, including links to consent templates, codes of ethics, and further reading that can support thoughtful, ethical genealogy research.