Verdächtige Familien. DNA-Abstammungsgutachten in Einwanderungsverfahren
Co-authored with Thomas Lemke, published in Forschung Frankfurt 1/2012
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Download (.pdf) The right not to know: an autonomy-based approach
Journal of Medical Ethics, 2004, vol. 30, p. 435-440.
The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the... more The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when nondisclosure poses a risk of serious harm to the patient’s relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be ‘‘activated’’ by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons
I test genetici. Diritti, doveri e "ignoranza genetica"
Published in "Bioetica e società", IX (2011), 1-2, pp. 79-88. In Italian
Once that genetic tests with a medical purpose are increasingly common, it's urgent to examine ethical and social... more Once that genetic tests with a medical purpose are increasingly common, it's urgent to examine ethical and social questions about genetic testing. In particular, some authors deny that a "right not to know", i.e. a right to remain in ignorance with regard to one's own genetic constitution, exists, while many national and international documents support this right. The author argues that the right to remain in ignorance with regard to one's own genetic information and the right not to share it if it has already been acquired, must take precedence over other considerations.
Genetic Testing and the Demand for Cancer Insurance
There has been an expansion of the availability of disease-specific insurance policies in the United States over the... more
There has been an expansion of the availability of disease-specific insurance policies in the United States over the past decade. At the same time, recently developed medical tests are providing consumers with new information regarding their risk of contracting particularly serious diseases. This exploratory study makes use of data from two groups of women to examine the demand for one type of disease-specific policy, cancer insurance. Members of the first group have been tested for a BRCA1 gene mutation that is associated with an 88% risk of contracting breast and/or ovarian cancer by age 70. The other group consists of women from the general population who have not been tested for any BRCA1 gene mutation.
The study results indicate that women who have been tested for the BRCA1 gene mutation are more likely than untested respondents to have purchased cancer insurance and to have recently thought about purchasing cancer insurance. The results also indicate that older women and women who have modest household incomes are more likely to have purchased cancer insurance. Women who have minor children, who are more highly educated, who have no health insurance, who have had cancer, or who report that they are in poor health are more likely to have recently contemplated purchasing cancer insurance. Our discussion of the findings highlights several issues that merit further consideration on the part of consumer policy makers working in the area of insurance regulation.
The Rise of Genetic Couplehood? A Comparative View of Premarital Genetic Testing
with Gil Siegal
Dor Yeshorim, a genetic testing programme focusing on the ‘genetic compatibility’ of prospective couples in Orthodox... more Dor Yeshorim, a genetic testing programme focusing on the ‘genetic compatibility’ of prospective couples in Orthodox Jewish communities in Europe, the US and Israel, is at the centre of our paper. We discuss the specific understandings of risks that enable the effective implementation of the Dor Yeshorim model in Orthodox populations. Furthermore, we compare Dor Yeshorim to the premarital genetic testing programme for thalassaemia in Cyprus and analyse the particular social practices which generate different notions of genetic identity in these two projects. In the Cypriot programme, where individual carrier status is disclosed, unfavourable genetic carrier status is conceptualized on the individual level and often solved by resorting to prenatal genetic diagnosis upon pregnancy. In the case of Dor Yeshorim, where no information on carrier status but only on the ‘genetic compatibility’ of both partners is revealed, a notion of ‘genetic couplehood’ arises which conceptualizes ‘genetic risk’ not individually but as a matter of genetic jointness. If a prospective couple is found out to be ‘genetically incompatible’, marriage plans usually are cancelled. Furthermore, by not disclosing individual carrier information, Dor Yeshorim successfully avoids a pressing issue which ‘secular’ genetic testing programmes struggle with: the peril of ‘knowing too much’.
• ‘Olalla’s Legacy: Twentieth-Century Vampire Fiction and Genetic Previvorship.’ The Journal of Stevenson Studies 7 (2010): 55-81.
by Sara Wasson
http://www.english.stir.ac.uk/research/profile/stevensonstudies.php
This article identifies two literary models for vampiric reproduction: the Dracula model of infection, and the... more
This article identifies two literary models for vampiric reproduction: the Dracula model of infection, and the ‘Olalla’ model of genetic inheritance. While the twentieth century was dominated by the former, the latter has come increasingly to the fore in the last two decades, arguably due to the increasing grip that genetic code has on the cultural imaginary. The model of vampirism presented in Stevenson’s vampire tale ‘Olalla’ is oddly prescient, in that it prefigures recent twists to vampire myth. Vampire fiction increasingly depicts genetic code as both mystery and threat.
Genetic testing is becoming increasingly widespread, and in some cases specific gene sequences have been identified as inclining the possessors to develop a disease later in life. Some people diagnosed with a genetic predisposition to illness have named themselves ‘previvors’. Fundamentally, the struggles of previvors are struggles for narrative agency: they wish to resist the grim dénouement implied by their genetic inheritance. The vampire texts examined in this article depict a similar struggle -- an effort to resist an implacable story.
Architectures of Genetic Medicine: Comparing Genetic Testing for Breast Cancer in the USA and the UK
This paper compares the development of genetic testing for breast cancer (BRCA testing) in the USA and the UK. It... more This paper compares the development of genetic testing for breast cancer (BRCA testing) in the USA and the UK. It argues that national political cultures played an important role in how these genetic testing technologies were shaped, and that the shapes of these technologies had important implications for the users of these systems. In order to demonstrate the roles of national social and political elements in the development of new genetic testing technologies, I introduce the concept of a technology’s architecture, which is made up of components and the specific ways in which these components are assembled to fulfill particular functions. In the USA, four very different BRCA testing systems initially emerged. However, one biotechnology company, Myriad Genetics, eventually used its legal and economic position to become the sole provider of testing. It offered BRCA testing the way many other laboratory tests were provided in the USA, available to anyone through any physician. The shape of this testing service had important implications for its participants, defining the client as a consumer who could demand access to any of Myriad’s laboratory services, but could not choose among testing systems. In the UK, the government-run National Health Service provided testing through regional genetics clinics, using family history information to assess risks and triage care. Clients in the UK were defined as citizens and patients, who had the right to equal access to the testing system but could not demand any specific services.
The right not to know: the case of psychiatric disorders
Co-authored with H Widdows - published in 2011 in the Journal of Medical Ethics
This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments... more This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntington’s disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimer’s disease. The right not to know will also be examined in the context of the diagnosis of psychiatric disorders which are associated with stigma or for which there is no effective treatment.
Einstellungen von Medizinstudentinnen und -studenten zu humangenetischer Forschung und genetischer Diagnostik
with Weißflog, Gregor. 2005. German Medical Science. 22/2.