The Michigan Department of Community Health stores almost 4 million dried blood spot specimens in the Michigan Neonatal Biobank. DBS are collected from newborns under a mandatory public health program to screen for serious conditions. At 24 to 36 hours of age, a few drops of blood are taken from the baby’s heel and placed on a filter paper card. The card is sent to the state public health laboratory for testing. After testing, MDCH retains the spots indefinitely for the (...) personal use of the patient and also, pursuant to a 2000 law, for possible research. (shrink)

The Michigan Department of Community Health stores almost 4 million dried blood spot specimens in the Michigan Neonatal Biobank. DBS are collected from newborns under a mandatory public health program to screen for serious conditions. At 24 to 36 hours of age, a few drops of blood are taken from the baby’s heel and placed on a filter paper card. The card is sent to the state public health laboratory for testing. After testing, MDCH retains the spots indefinitely for the (...) personal use of the patient and also, pursuant to a 2000 law, for possible research. (shrink)

Advance care planning allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical (...) options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an advance care planning tool and to increase integration of such discourse into advance care planning policy as adjuncts and complements to written advance directives. This paper reviews current legislation about written advance directives and dissects how documentation of spoken interactions might be integrated and considered. We discuss specific institutional policy changes required to facilitate implementation. Finally, we explore the ethical issues surrounding the increased usage and recognition of clinician–patient conversations in advance care planning. (shrink)

The patient wished to receive an experimental drug that she was instrumental in developing. After her diagnosis, she had investigated treatments that might help her condition and discovered that a specific compound could be beneficial. To further the development of this potential drug, she obtained preclinical data, founded a company, and sought investment from venture capitalists. The company was about to begin phase I testing, but the clinical trial had not yet opened. In addition, she would not have been a (...) candidate for the study, as it excluded patients with advanced disease. To be able to administer this drug to her, the patient's team of oncologists was in the process of drafting an individual patient investigational new drug application, including the protocol for the drug's delivery, to the Food and Drug Administration. The company developing the drug had preliminarily agreed to provide it. This protocol was also under review by the institutional review board of the university, and the ethics committee was consulted to determine whether she should receive the drug. (shrink)