Banca de DEFESA: Luan Christ Rodrigues

Uma banca de DEFESA de DOUTORADO foi cadastrada pelo programa.
STUDENT : Luan Christ Rodrigues
DATE: 15/12/2023
TIME: 14:30
LOCAL: https://meet.google.com/gza-dbya-esu
TITLE:

THE FACT-NORMATIVE PARAMETERS FOR ACCESS TO GENETIC INFORMATION IN THE FACE OF POLYGENIC RISK SCORES AND GENOME EDITING OF EMBRYOS IN ASSISTED HUMAN REPRODUCTION: implications of risk, vulnerability, and genetic discrimination.

KEY WORDS:

Access to genetic information. Technological risk. Genome editing of human embryos. Polygenic risk scores in human embryos. Genetic discrimination. Vulnerability.

PAGES: 235
BIG AREA: Ciências Sociais Aplicadas
AREA: Direito
SUMMARY:

Objective: to analyze the normative parameters of the Brazilian legal system regarding access to genetic information in the context of the risks posed by new technologies in assisted reproduction, especially in scenarios of vulnerability and genetic discrimination. Methodology: a) analytical-descriptive research is employed, with a conceptual and exploratory approach, using the deductive approach and systematic legal interpretation methods to study the regulation of technological risks in assisted reproduction and to investigate the legal informational dimensions and parameters surrounding reproductive technological risks, particularly within a context of genetic discrimination and vulnerability; b) the text and data analysis technique known as text mining is used to retrieve information from the Espacenet patent database in order to present the technological state of the art resgarding polygenic risk scores for embryos in assisted reproduction; c) the inductive-deductive process is used to create categories for systematic content analysis in blogs, news articles, and recent articles involving informational asymmetry in the relationships between doctors and patients in the field of technological innovation in assisted reproduction. Results: there are indicators that affect the parameters of access to genetic information in assisted reproduction: informational asymmetry in complex and controversial scenarios; the lack of genetic diversity in genome sequencing databases for underrepresented individuals, which exacerbates genetic discrimination against vulnerable individuals; and the lack of scientific evidence for long-term monitoring of individuals over decades and subsequent generations, given the heritability of genetic changes. Conclusion: the normative parameters for access to genetic information are established through a systematic interpretation of completeness between the Brazilian legal system and soft law legal institutes. Although persuasive from an interpretive perspective, these normative parameters may be insufficient when applied to specific cases involving vulnerable individuals in the face of technological innovation in assisted reproduction.

COMMITTEE MEMBERS:
Interno - 1206283 - ALEXANDRE KEHRIG VERONESE AGUIAR
Presidente - 2279451 - ANA CLAUDIA FARRANHA SANTANA
Externa à Instituição - JULLIANE DUTRA MEDEIROS - UFJF
Interno - 2292593 - MARCIO NUNES IORIO ARANHA OLIVEIRA
Externa à Instituição - SANDRA MARA CAMPOS ALVES - FIOCRUZ