The right to be forgotten regarding genetic data: a legal and ethical analysis

This article investigates an under-discussed provision of the European Union's (EU's) General Data Protection Regulation (GDPR) regarding genetic data, i.e., the right to be forgotten.The debate on this right came from the commercerelated side of data protection instead of the medical side.Thus, this article addresses the implications of the RTBF for the lawful processing of familial genetic data.The article develops a normative, ethically focused principles argument about interpreting genetic data's right to be forgotten.It gives due consideration to autonomy, privacy, and human dignity.It argues that the individualistic approach of genetic privacy materialised through the extreme solution of data erasure is challenging to combine with familial and scientific research interests.The article suggests an interpretation of the GDPR according to bioethical principles and the inclusion of a specific exception regarding genetic data to prevent patients from claiming the right to be forgotten.

Authors

Institutions

Publication Details

Journal
Acta bioethica
Published
2024-09-13
DOI
https://doi.org/10.4067/s1726-569x2024000200231
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

The right to be forgotten regarding genetic data: a legal and ethical analysis

Guilhermina Rêgo, Rui Nunes, Mónica Correia
Acta bioethica
Ethics in Clinical Research
article

The right to be forgotten regarding genetic data: a legal and ethical analysis

Guilhermina Rêgo, Rui Nunes, Mónica Correia
article en

Abstract

This article investigates an under-discussed provision of the European Union's (EU's) General Data Protection Regulation (GDPR) regarding genetic data, i.e., the right to be forgotten.The debate on this right came from the commercerelated side of data protection instead of the medical side.Thus, this article addresses the implications of the RTBF for the lawful processing of familial genetic data.The article develops a normative, ethically focused principles argument about interpreting genetic data's right to be forgotten.It gives due consideration to autonomy, privacy, and human dignity.It argues that the individualistic approach of genetic privacy materialised through the extreme solution of data erasure is challenging to combine with familial and scientific research interests.The article suggests an interpretation of the GDPR according to bioethical principles and the inclusion of a specific exception regarding genetic data to prevent patients from claiming the right to be forgotten.

Acta bioethicaVol. 30(2)
Universidade do Porto (PT)
Peace, Justice and strong institutions
Openalex Percentile: Top 77%
Ethics in Clinical Research
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.