Geneforum was established to ensure that the decisions about genetic research and biotechnology are informed by public values. Geneforum's approach is similar to the widely respected and extensively field-tested model of public engagement created by Orego
GeneWatch UK is a not-for-profit group that monitors developments in genetic technologies from a public interest, environmental protection and animal welfare perspective. GeneWatch believes people should have a voice in whether or how these technologies a
In this case, a mistake was made in the process of an in vitro-fertilisation procedure involving a Singaporean Chinese woman and her German Caucasian husband.
Mistakenly, the wife’s egg was inseminated with sperm from an unknown Indian donor.
Baby P was born healthy, but with a different skin tone.
The claimant’s affidavit states that the pain and suffering that she suffered as a result, physically, mentally and emotionally, was “beyond words” and was “agonizing”
A woman with breast cancer is found to carry a mutation that predisposed her to her condition. Her two sisters and brother may also carry the mutation. Informing them of this would allow them to consider screening and perhaps take steps to prevent the onset of the disease or the passing of the mutation to their unborn children. Not informing them could mean the sisters will also develop breast cancer, as might the eventual daughter of the patient's brother. The patient is at liberty to tell her siblings that they might want to think about screening, but her doctors are not. Patient confidentiality laws prevent them. But is this morally right? Does the breaking of confidentiality outweigh the good that could be done by doctors informing the patient's relatives? Is it time to change patient confidentiality laws? The findings of a group of researchers have led its members to suggest that it is.
Biobanks are increasingly seen as new tools for medical research. Their main purpose is to collect, store, and distribute human body materials. These activities are regulated by legal instruments which are heterogeneous in source (national and international), and in form (binding and non-binding). We analyse these to underline the need for a new model of governance for modern biobanks. The protection initially ensured by respect for fundamental rights will need to focus on more interactions with society in order to ensure biobanks' sustainability. International regulation is more oriented on ethical principles and traces the limits of the uses of genetics, while European regulation is more concerned with the protection of fundamental rights and the elaboration of standards for biobanks' quality assurance. But is this protection adequate and sufficient? Do we need to move from the biomedical research analogy to new forms of legal protection, and governance systems which involve citizen
New guidelines issued by the UK General Medical Council (GMC) will allow doctors to disclose genetic information to relatives - even when patients object, if there are compelling medical reasons for doing so. The guidance, which comes into effect on 12 October, acknowledges that confidentiality is not always absolute; disclosing information about a genetic link to a disease may protect another individual from serious harm. For example, if a patient is diagnosed with a hereditary form of cancer, a doctor will now be able to inform relatives about the potential risk the genetic link could carry. Awareness of such a genetic risk could prompt investigation for the genetic mutation responsible and regular screening, thereby improving the chance of early detection and long-term prognosis.
The National Human Genome Research Institute's (NHGRI) Ethical, Legal and Social Implications (ELSI) Research Program was established in 1990 as an integral part of the Human Genome Project (HGP) to foster basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities. The ELSI Research Program funds and manages studies, and supports workshops, research consortia and policy conferences related to these topics.
In the last couple of years, several new biobanks have been established to enable the study of health developments of people and their families over their entire lifetime. This paper reviews the legal and ethical implications of a loss of decision-making capacity by research subjects in long-term research associated with large biobanks.