Friday, May 28, 2010

Gold Standard for Access to Personal Genetic Information

The document, titled  the "DNA Credo", was written by ethicist Ronald M. Green, Ph.d. in the summer of 2000 as part of a direct to consumer genetic testing business plan. Dr. Green was Director, Office of Genome Ethics at NIH 1996-1997 and has written extensively on genetics over the years. The credo below is on file at the USTPO as part of supporting documentation for US Patent: 7089498 of which he is a co-inventor.
"DNA Credo" by Ronald M. Green, Ph.D. (July, 2000)
I.         We are committed to the principle that you own your DNA. Each individual has the sole right of access to his or her DNA information as well as the sole right to control access to it by others. This means that no other parties—not government, not insurers, not employers, and not other family members—have a right of access to this information. The only exception to this rule is that, when ethically appropriate, parents of minor children may access the results of DNA analysis and testing done for their child.
II.         We are committed to providing ethically appropriate DNA analysis and testing to individuals who provide their DNA to us. However, we also believe that we have a right to determine which services we will offer. We will not perform tests that are of doubtful validity or that clearly produce more harm than good for the individual tested or for society.
III.         We are committed to developing and maintaining the most secure and reliable technical means of information access. These technical means are designed to prevent anyone, including the personnel of Dominga LLC, from linking the results of genetic analysis or testing to any subscriber to our services.
IV.         We are committed to providing the most up-to-date information on programs of genetic analysis, testing, and screening.
V.         We are committed to maintaining transparency and integrity in our conduct. We will inform our subscribers, employees, investors, communities, and other stakeholders of the decisions we make that affect them. We will continuously review the ethical implications of our choices and policies and strive to ensure that they protect the interests and rights of all our stakeholders.
..end of credo.
I hope the regulation of personal genetic data requires terms of service and informed consent forms that clearly state information relevant to the consumer's core interests such as:
1.  Whether the consumer can have their raw genetic information removed from the database upon their request.
2.  Whether the consumer has exclusive control over who has access to their data.
3.  Whether the consumer can download their raw genotype data and exercise management of that information in the marketplace as they determine to be in their self interest.
4.  Whether the entity offering services agrees to having third parties audit their system to prove only authorized use has taken place.
Alice Rathjen
CEO & Founder, DNA Guide, Inc.
twitter: dnatimes

Posted via email from DNA Guide

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