Genomics and its ethical, ecological, economic, legal and social aspects ABSTRACT: Genetic testing will play an increasing role in the practice of obstetrics and gynecology. To ensure patients receive the highest quality of care, physicians should familiarize themselves with the range of genetic testing currently available and the limitations of testing. Clinicians should be able to identify patients in their practice who are candidates for genetic testing. Candidates include patients who are pregnant or planning pregnancy and who are at risk of giving birth to affected children, as well as gynaecological patients who, for example, have or may predispose to certain types of cancer. The purpose of this Committee opinion is to examine some of the ethical issues surrounding genetic testing and to provide guidance on the appropriate use of genetic testing by obstetricians and gynaecologists. Expert consultation and guidance is likely to be necessary when obstetrician-gynaecologists are faced with these issues. Under the Cystic Fibrosis Initiative, the projects were initiated only two years after the cystic fibrosis gene was discovered, at least in part, because the ELSI program was not yet established at the time the gene was discovered. Genetic studies of cancer were undertaken shortly after the discovery of several colorectal cancer genes and before the discovery of breast cancer genes. Anticipating such scientific discoveries allows these questions to be addressed in a timely manner before problems arise, rather than after they have already arisen. The formation of such research consortia is a practice that has recently been considered an effective means of achieving the above objectives. Public health data protection laws generally include information collected by public health authorities in the performance of their duties. Disclosure is permitted for public health purposes, such as case investigations, but with the explicit or implied requirement that disclosure must be necessary to achieve a true public health objective. Disclosure is also generally permitted for research purposes, with conditions that would prevent the subsequent release of identifying information about an individual.
In addition, many states allow disclosure based on subpoenas or court orders (e.g., Arkansas 48, California 49, Hawaii 50). Other states leave disclosure to the discretion of public health officials (e.g., Pennsylvania).51 If there are circumstances in which the geneticist or other health professional may violate confidentiality and disclose information to a spouse, relative or other third party, such as an employer, these circumstances must be explained prior to testing; And if the patient wishes, they should have the option to be referred to a health care provider who maintains confidentiality. As genetic sequencing capabilities become more powerful and costs decrease, the reach of genomics extends beyond research labs to services, outpatient clinics and, with the commercialization of direct-to-consumer screening services, to patients` homes. More and more patients receiving various diagnoses – from cancer to cardiomyopathy – can reasonably expect to have conversations with their providers about indications for genetic testing. In this dynamic context, an understanding of the ethical principles and history underlying clinical genetics will provide clinicians with the tools to guide their practice and help patients navigate a complex medical-psychosocial terrain. This article provides an overview of the main ethical concerns surrounding clinical genetics. The topic is approached with an emphasis on clinical practice, but research is also considered. The exam is organized around the timing and informational sequence of issues that often arise during the pre-test, test, and post-test phases of patient care. From a medical, legal and historical perspective, this report covers the following topics: (1) informed consent, (2) feedback of results, and (3) privacy and confidentiality, and aims to provide readers with an appropriate basis for applying ethical principles to genetic testing paradigms, with an understanding of the contextual landscape in which these situations occur.