David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
Studies in Ethics, Law, and Technology 3 (1) (2009)
The rate of any biomarker discovery is highly influenced by the costs associated with obtaining the relevant genetic, genomic, and clinical data. Currently, to identify a human genetic or genomic biomarker, a clinical researcher must identify a set of transplant recipients that either has been or can be clinically phenotyped, and then obtain samples from patients that can be subjected to gene expression and proteomic analysis. This process of obtaining a clinical cohort by matching donors to recipients is usually time-consuming and expensive. It is further time constrained by patient's signed written consent which has a use-by date.Biomarker database systems can play a pivotal role in establishing mechanisms that enable clinical researchers to access clinically derived genetic and co-variate data in a secure, privacy-aware, de-identified and auditable manner. They can also establish mechanisms and audit trails that monitor the movement of research data across institutions due to their custodial responsibilities to protect patient privacy.In this paper, we prototype the concept of a de-identified centralized biomarker repository that empowers principal investigators and researchers to access multiple data sources needed for the conduct of genomic, proteomic interpretation and computational experiments. The repository takes the form of a research data mart such that the enrolled patients' clinical and treatment history can be tracked during pre and post transplant phases. We demonstrate how technology and information engineering design principles help to implement a de-identification schema for patients to protect patient privacy and prevent unauthorized data access
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Marek Czarkowski (2006). The Protection of Patients' Rights in Clinical Trials. Science and Engineering Ethics 12 (1):131-138.
Lars Øystein Ursin (2008). Biobank Research and the Right to Privacy. Theoretical Medicine and Bioethics 29 (4):267-285.
Alan L. Lockwood (1977). Values Education and the Right to Privacy. Journal of Moral Education 7 (1):9-26.
Herman T. Tavani (2004). Genomic Research and Data-Mining Technology: Implications for Personal Privacy and Informed Consent. Ethics and Information Technology 6 (1):15-28.
Anita Silvers & Michael Ashley Stein (2003). Human Rights and Genetic Discrimination: Protecting Genomics'Promise For Public Health. Journal of Law, Medicine & Ethics 31 (3):377-389.
Gloria González Fuster (2010). Inaccuracy as a Privacy-Enhancing Tool. Ethics and Information Technology 12 (1):87-95.
Alexander Dix (2010). Built-in Privacy—No Panacea, but a Necessary Condition for Effective Privacy Protection. Identity in the Information Society 3 (2):257-265.
David Meeler (2008). Is Information All We Need to Protect? The Monist 91 (1):151-169.
Herman T. Tavani (1999). Informational Privacy, Data Mining, and the Internet. Ethics and Information Technology 1 (2):137-145.
Mats Hansson (2012). Where Should We Draw the Line Between Quality of Care and Other Ethical Concerns Related to Medical Registries and Biobanks? Theoretical Medicine and Bioethics 33 (4):313-323.
L. Paul Husselbee (1994). Respecting Privacy in an Information Society: A Journalist's Dilemma. Journal of Mass Media Ethics 9 (3):145 – 156.
David L. Wiesenthal & Neil I. Wiener (1996). Privacy and the Human Genome Project. Ethics and Behavior 6 (3):189 – 202.
Peter Hustinx (2010). Privacy by Design: Delivering the Promises. [REVIEW] Identity in the Information Society 3 (2):253-255.
Herman T. Tavani (1999). KDD, Data Mining, and the Challenge for Normative Privacy. Ethics and Information Technology 1 (4):265-273.
Dag Elgesem (1999). The Structure of Rights in Directive 95/46/EC on the Protection of Individuals with Regard to the Processing of Personal Data and the Free Movement of Such Data. [REVIEW] Ethics and Information Technology 1 (4):283-293.
Added to index2010-09-14
Total downloads2 ( #686,453 of 1,907,655 )
Recent downloads (6 months)1 ( #463,516 of 1,907,655 )
How can I increase my downloads?