For example, in 1987, in the Greenberg v. Miami Children's Research Hospital Institute case a father of 2 children with Canavan disease worked with a researcher, Reuben Matalon, to organize a registry of “of affected families to collect tissue from willing donors to begin studying the molecular basis of the disease” (Allen). Then, in 1997, an employer of Matalon and Miami Children’s Hospital acquired a patent on the Canavan gene and “began licensing a test to identify Canavan mutations” (Allen). Unfortunately, three nonprofit organizations and four families arranged a law suit stating that Miami Children’s Hospital along with Matalon “used the children’s tissue without consent to license a patent and develop a commercial test” (Allen). With this being said, the four families and 3 nonprofit organizations “claimed, among other things, that they had an ownership interest in the excised tissue and that the defendants ‘converted’ the tissue for their own economic benefit. The court found that the tissue was given voluntarily for research without any expectation of return, and therefore the plaintiffs had no ownership interest in the tissues, or the research performed using the tissue. The court noted that a contrary rule would cripple medical research because it would ‘bestow a continuing right for donors to possess the results of any research conducted by the hospital’” (Allen). Even though the proper use of informed consent was violated and the information of the tissues being used to create commercial test was disregarded, due to the tissues being given voluntarily to research, the donors have no rights to them nor the compensation earned. Also, in some cases the dispute “has been framed as one of tissue ‘guardianship’ (or bailment) vs ‘ownership’” (Allen). When looking at the concept of research specimens “the question is whether the transfer of
For example, in 1987, in the Greenberg v. Miami Children's Research Hospital Institute case a father of 2 children with Canavan disease worked with a researcher, Reuben Matalon, to organize a registry of “of affected families to collect tissue from willing donors to begin studying the molecular basis of the disease” (Allen). Then, in 1997, an employer of Matalon and Miami Children’s Hospital acquired a patent on the Canavan gene and “began licensing a test to identify Canavan mutations” (Allen). Unfortunately, three nonprofit organizations and four families arranged a law suit stating that Miami Children’s Hospital along with Matalon “used the children’s tissue without consent to license a patent and develop a commercial test” (Allen). With this being said, the four families and 3 nonprofit organizations “claimed, among other things, that they had an ownership interest in the excised tissue and that the defendants ‘converted’ the tissue for their own economic benefit. The court found that the tissue was given voluntarily for research without any expectation of return, and therefore the plaintiffs had no ownership interest in the tissues, or the research performed using the tissue. The court noted that a contrary rule would cripple medical research because it would ‘bestow a continuing right for donors to possess the results of any research conducted by the hospital’” (Allen). Even though the proper use of informed consent was violated and the information of the tissues being used to create commercial test was disregarded, due to the tissues being given voluntarily to research, the donors have no rights to them nor the compensation earned. Also, in some cases the dispute “has been framed as one of tissue ‘guardianship’ (or bailment) vs ‘ownership’” (Allen). When looking at the concept of research specimens “the question is whether the transfer of