The presented article is devoted to the question of whether extended access therapy can or should be accompanied by research activity. It consists of three parts. The first lists the tasks that can be used for medical information regarding extended access programs, which leads to the conclusion that even taking into account the specific limitations of their cognitive value, this type of data can be meaningfully used. The second part is devoted to the limited regulations in European law concerning the (...) discussed issue, and the Polish Act on the Professions of Physician and Dentist which grants physicians/researchers broader powers. In the last part of the article, two arguments are presented to ethically justify the granting of such broad powers to researchers, and thus limiting the autonomy of patients. (shrink)

One of the signs of the rapid development of medical genetics is a gradual increase in the number of genetic tests available. Different aspects of this phenomenon have been addressed and debated in the source literature, but so far relatively little has been said about the obligation to provide equal access – in the social context – to selected kinds of tests. In this article, I attempt to reconstruct those few suggestions, dealing with the principles of funding genetic tests from (...) public resources, that can still be found in the source literature. Accordingly, I have analyzed the possibilities of identifying the criteria of selecting diagnostic and preventive tests to be eligible for refund, as well as of screening programmes. (shrink)

The steady growth of the number of DNA tests offered results in the discussion on the ethical aspects of these tests becoming increasingly lively and multifaceted. This text provides an overview of selected issues concerning the characteristics, protection and quality of the information acquired as a result of carrying out DNA tests. I discuss the salient points in the debates on the possibility to justify the so-called genetic exceptionalism, and the ways of specifying the scope of the principle of confidentiality (...) that protects the privacy of the information given by the subject. The final part of the article features the discussion on the importance of the possibility to use the information, acquired from these tests, in practice – for making decisions about the introduction of new kinds of tests for the clinical application. (shrink)

Tematem artykułu jest pytanie, czy będąca podmiotem autonomicznym jednostka ma prawo do niewiedzy o własnym stanie zdrowia. Punkt odniesienia dla prowadzonych rozważań stanowi klasyczny artykuł J. Harrisa i K. Keywood pt. Ignorance, Information and Autonomy i zawarte w nim stanowisko, zgodnie z którym rzekome prawo do niewiedzy jest sprzeczne z autonomią. Autorka koncentruje się na krytycznej analizie przyjętej przez wspomnianych autorów koncepcji autonomii, która prowadzi ją do wniosku, że tak rozumiana autonomia (1) nie może zostać uznana za nadrzędną wartość etyki (...) medycznej oraz (2) wyklucza podejmowane przez jej zwolenników próby ugruntowania prawa do niewiedzy w innych wartościach. W końcowych partiach tekstu autorka stara się uzasadnić tezę, iż odpowiednio sformułowana koncepcja autonomii pozwala stwierdzić, że pacjent, jako podmiot autonomiczny, pośród innych praw ma także prawo do niewiedzy o własnym stanie zdrowia. (shrink)