Notes on DNA Privacy and Ethics in Forensics

Commentary on Damned by DNA — Balancing Personal Privacy with Public Safety

Article Information

  • Author: Kimberlee Sue Moran
  • Affiliation: Department of Chemistry, Rutgers University, Camden, NJ
  • Date Received: 23 July 2018
  • Date Revised: 22 August 2018
  • Date Accepted: 12 September 2018
  • Available Online: 25 September 2018

Keywords

  • Forensic DNA
  • Databases
  • Ethics
  • Privacy
  • Data mining

Overview of Issues

  • Comparison to Cambridge Analytica:

    • Collection of personal data from Facebook to create profiles.
    • Users unknowingly consented to broader data access than intended.
    • Similarity to DNA databases where genetic information is shared extensively.

  • Public Consent and Genetic Information:

    • Consent is granted for genetic profiling under the guise of genealogical services, but it encompasses data from family members as well.
    • Concerns about who benefits from this data and how it is utilized.
    • Examples include police investigations using familial DNA searches such as in the Golden State Killer case.

Contamination Concerns

  • Pre-DNA Era Practices:

    • Evidence handling was less stringent, potentially leading to contamination (e.g., DNA from police personnel).

  • Modern DNA Analysis:

    • Advances in single-cell profiling increase the chances of detecting multiple contributors to DNA evidence.
    • Possibility of irrelevant profiles complicating investigations, raising ethical concerns on inclusion as suspects vs. irrelevant contributors.

Transparency of Genetic Services

  • DNA Black Box:

    • Users submit samples without full awareness of how their information is used or shared, similar to social media usage problems.
    • Organizations utilize genetic data for commercial profit, often without explicit user awareness.

  • Privacy Rights Erosion:

    • Law enforcement's search of private DNA databases risks individual privacy rights, putting convicted and innocent users at equal risk of data exposure.
    • European Court Ruling (2008):
    • Orders the removal of DNA records from individuals without criminal convictions due to violations of the presumption of innocence.

Issues of Consent and Genetic Information

  • Scope of Consent:

    • Consent for genetic access extends to familial members, raising ethical dilemmas regarding their privacy.
    • Complexity and obscurity of consent terms in services, leading to potential exploitation.

  • Identity Theft Risks:

    • Concerns about risks to personal privacy through the careless sharing of genetic data.
    • The distinction of privacy rights as qualified, needing balance between personal privacy and public safety.

Ethical Considerations

  • Balancing Rights:

    • Tension between a victim’s right to justice and the privacy of innocent relatives.
    • The role of law and technology must evolve to protect individual privacy rights effectively.

  • Legislation:

    • The Genetic Information Nondiscrimination Act (2008) aims to protect from misuse by health insurers and employers.
    • Lack of protections against government misuse highlights gaps in current regulations concerning personal genetic data.

  • Future Implications:

    • Possible increases in backlash against unethical data practices similar to technology companies’ handling of personal information, prompting regulatory changes in genetic databases.

Conclusion

  • The interplay of technology and ethics regarding genetic and genealogical services necessitates ongoing dialogue and action to safeguard personal privacy while addressing public safety needs. The evolving understanding of privacy must adapt to the complexities of interconnected genetic information sharing.

References

  • Various articles and reports discussing the aforementioned topics and relevant ethical, legal, and privacy issues.