O consentimento em biobancos para fins de investigação biomédica

  • Cíntia Eugénia Monterde de Jesus Águas Pereira (Student)

Student thesis: Doctoral Thesis

Abstract

This dissertation is the outcome of a study developed within the scope of the PhD in Bioethics at the Bioethics Institute of the Portuguese Catholic University, Porto. The importance of organized collections of human biological material, to which health data or other relevant information is associated, has increased in recent decades. At present, biobanks are widely recognised as fundamental infrastructures for the advancement of scientific knowledge, with a view to improving people's health and quality of life with benefits for society as a whole. Biobanks for biomedical research come in a variety of sizes and shapes. They can be local, national or cross-border, standalone projects or part of a wider network. They can be owned by states, hospitals, universities, private entities. They can be populational or pathologyspecific. They can aim for profit or for the common good. These features are decisive in determining biobanks’ scope and modes of operation, starting with their models of consent. The extent, the constitutive elements and the validity of informed consent are key elements to legitimise the use of preserved human biological samples for scientific and biomedical research purposes. It is necessary to reflect on the challenges faced by informed consent and question whether this is the only or the most appropriate means to ensure the ethical validity of this type of research. By reflecting on the ethical aspects of the relationship between the person and his/her biological sample and the implications of consent within a framework for governance, we propose to point out avenues for the development of ethical decision-making models for and with biobanks which are applicable to the Portuguese context.
Date of Award8 May 2023
Original languagePortuguese
Awarding Institution
  • Universidade Católica Portuguesa
SupervisorMichel Renaud (Supervisor)

Keywords

  • Biobanks
  • Autonomy
  • Consent
  • Bioethics
  • Biomedical research
  • Governance

Designation

  • Doutoramento em Bioética

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