Ethical Issues in Clinical Genetics and the Indian Subcontinent

Author(s):  
Michael Parker
1992 ◽  
Vol 20 (4) ◽  
pp. 244
Author(s):  
Peter N Campbell

1994 ◽  
Vol 10 (4) ◽  
pp. 527-545 ◽  
Author(s):  
Hans Galjaard

AbstractClinical genetics services have become an integrated part of health care in nearly all European countries. The emphasis has been on postnatal cytogenetic, biochemical, and DNA diagnosis of congenital disorders, carrier detection, genetic counseling, and prenatal diagnosis. Use has been satisfactory, and very few ethical problems have arisen, apart from moral objections against abortion by minority groups. The progress of human gene mapping is associated with new perspectives in clinical genetics and will enable the identification of people at risk of major adult diseases. This prospect has caused some concern about psychosocial and ethical issues that are being dealt with in different ways in various postindustrial societies. In future decades, however, 95% of the world's population increase will occur in developing countries. In most of these countries, a low per capita income, female illiteracy, low rates of contraceptive use, teenage pregnancy, and religious and traditional cultural factors are major complications of implementing genetic services at a global level. There are, however, some exceptions, which are discussed.


Author(s):  
Genna Braverman ◽  
Zachary E. Shapiro ◽  
Jonathan A. Bernstein

1992 ◽  
Vol 4 (6) ◽  
pp. 983-988 ◽  
Author(s):  
Marvin R. Natowicz ◽  
Sherri M. Broder

Blood ◽  
2008 ◽  
Vol 112 (11) ◽  
pp. 744-744 ◽  
Author(s):  
Kimberly A Strong ◽  
Ian Kerridge ◽  
Christopher Jordens ◽  
Rachel A Ankeny ◽  
Peter J. Shaw ◽  
...  

Abstract Thirty percent of patients who need a hematopoietic stem cell transplant (HSCT) have an HLA-matched related donor. Many other patients find a suitably matched unrelated donor through one of the registries of volunteer donors available worldwide. However, some children (and especially children from ethnic minorities) will still not be able to secure a suitable donor. In these cases, parents may seek to have another child in order to create a matched sibling donor – often called a ‘savior sibling’. This practice is morally contentious and generates intense debate. A process is now available to assist parents in this endeavor. It involves three technologies that are proven, legal, available and in use – namely, in vitro fertilization, pre-implatation genetic diagnosis and HLA typing. There is currently no clinical consensus about whether (and if so, how) to advise parents about this option. A study has been conducted examining the attitudes of health professionals and parents concerning the creation of ‘savior siblings’, and of the relevant clinical practices. The study includes in-depth, semi-structured interviews with a range of health professionals involved in the care of children needing HSCT. Twenty-one interviews were conducted with practitioners in clinical genetics, genetic counseling, hematology, oncology, immunology, neurology, and nursing regarding knowledge about the combined technologies, clinical indications for their potential use, and ethical issues arising regarding savior siblings. Interviews were also conducted with ten parents who have been faced with decisions about HSCT for a sick child, to find out how much they know and understand about treatment options, to identify any issues they raise concerning the combined technologies, and discuss what information they expect from health professionals. All interviews were transcribed and analyzed using established qualitative methods to identify emergent themes. Major findings from the study include the following. Clinicians, including pediatric hematologists and oncologists, rarely discuss these technologies unless the parents raise the topic themselves. They do not discuss these combined technologies for a number of reasons including: lack of knowledge about the techniques (including cost and availability); doubts about their clinical utility; and the moral appropriateness of using these technologies to create a savior sibling. In the parental interviews, parents consistently reported wanting to know about all therapeutic options and overwhelmingly dismissed the ethical arguments raised against creating a savior sibling. Interestingly, despite concern about discussing this potential option with parents, when health professionals placed themselves in the position of a parent making treatment decisions for their children, they reported that they would also want full disclosure about available technologies. These finding are relevant to not only the combined technologies involved in creating a savior sibling but to any new drug or technology involved in hematology and transplantation. Discussions involving emerging or contentious technologies need to occur consistently in the clinical setting.


2017 ◽  
Vol 10 (8) ◽  
pp. 481-488 ◽  
Author(s):  
Anneke Lucassen ◽  
Bobbie Farsides

‘It runs in my family’ is an expression commonly used by patients. Family history is recorded as part of new patient checks, and it is usual to ask patients with symptoms suggestive of a disease with an inherited component about family history of that disease. As genetic technology has become cheaper and faster, it is increasingly applied outside the specialty of clinical genetics: paediatricians use comparative microarrays, prenatal testing is offered to many women in pregnancy and, in the fields of oncology and cardiology, genetic predispositions to disease are frequently sought. GPs are already seeing these developments impact on their practice and will inevitably become more involved in the genetic management of families as testing becomes more widespread.


2019 ◽  
Vol 3 (6) ◽  
pp. 707-711 ◽  
Author(s):  
Andrew Peterson ◽  
Adrian M. Owen

In recent years, rapid technological developments in the field of neuroimaging have provided several new methods for revealing thoughts, actions and intentions based solely on the pattern of activity that is observed in the brain. In specialized centres, these methods are now being employed routinely to assess residual cognition, detect consciousness and even communicate with some behaviorally non-responsive patients who clinically appear to be comatose or in a vegetative state. In this article, we consider some of the ethical issues raised by these developments and the profound implications they have for clinical care, diagnosis, prognosis and medical-legal decision-making after severe brain injury.


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