Health IT: Data and Sample Ownership in a Research Study,

Who owns research samples after they are obtained?
My views on Clinical Informatics Ethics:- Havasupai Medical Genetics study.
The research group can hardly own sample in a research that involves biospacimen that can be traced back to the owner. This fact I think, sets boundaries to what should define the relationship of each part in the study; a researcher meant to answer the research question and the subject willingly and knowingly consents to be a source of such information.
 These samples though they are known as body “parts” of the subject as blood and tissue, they carry more than the names attached to them; the blueprint “DNA” of the subject who is unique and distinct from any other beings. In this case I would think the fact that "no any human can own other human whole or in part" thence no consent should transfer human being ownership.
In the Havasupai case though the subject has consented into providing the sample for research, the fact that it contains his/her information, it will never cease to confer a true ownership. Samples are meant to be used as sources of unknown information needed in the study and that information should be limited to the initial agreement of the researcher and the subject and not as a bargain of selling or loosing ownership.
Any sample that would contain no traceable human print i.e. DNA e.g., urine, sweat or feaces can be owned by the investigator or study group at pre-negotiated terms since the actual content places no traceable prints.

Who owns the data derived from the samples?
In the other part, the main purpose of a study is to find out the information that is coded collectively in the subjects through their samples. If this information is a collective not an individual’s summary of information it should remain to be the ownership of the person who labored to find such information. Writers have been known to own the books they write and no one has ever claimed ownership in grounds of being the inventor of alphabets like-wise musicians vs instruments markers.

This should not be different from the need for innovation or discovery in any field of research. The quest for information and solving of mysteries has been a man’s quest to conquer his environment. Science has always ensured that all efforts to this is directed to those concerned. It’s this fact that the research data in any form or from any source should remain in the sole ownership of the researcher. Only Information!

Why does ownership matter?
Ownership matters; it sends a sense of satisfaction and confers identification to each part of the relationship. To a researcher, it’s recognition of work done and efforts put into; to the subject, it’s a satisfaction of being a sole being in the part of that information.

Would anyone want to have his/her human right co-owned by anyone? Would anyone wish to have his/her body owned by another as a separate entity to be used without his knowledge? This Same feeling I think governs organ donation and organ transplant.

These are identity parts that until the subject donating them accepts knowingly to part way with respectful will never cease to be owned by the donor. I still think he/she can choose to have them destroyed at anytime after she agreed to donate them.

For the case of the Havasupai; their origin, way of life and belief sent a satisfaction as a community. It held them as the Havasupai people and the fact that the subsequent studies stole their identity and exposed it to other without their knowledge poses a threat and was a mockery and insult to their beliefs and way of life.

The question here can never be; if the consent was clear about all the forthcoming studies, would that still deny them ownership of the samples?

Consent would have described the nature of the study to pay way for the willingness of members to participate but could not waive the ownership of the samples/the existence of a separate identity of a human being. Even if it has stated that these studies on schizophrenia and origin were to be carried out, the state of ownership of the sample would remain to the Havasupai community/individuals and not anyone else. But if they had released the ownership in the hands of the researchers at a different arrangement then they would cease to have such entitlements.

To me this case is a battle of invasion of privacy and not of ownership of data or samples. The agreement as stipulated in returning the samples and the data of the studies done with no consent is meant to protect the privacy and avoid more harm in future.

This is not meant to confer ownership of the data to the Havasupai people.

(In response to Biomedical Ethics: Who owns what in a research setting)

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