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From the Editor and Authors
Continuing advances in medical genetics are resulting in new standards of care for patients of every age and socioeconomic group. Yet, despite these advances, issues regarding universal access to services, privacy and reimbursement continue to reflect a medical system in flux. Both providers and consumers are struggling to address these concerns, even as new genetic technologies are daily changing the face of medicine.
This issue of the Genetic Drift offers medical professionals insight into the consumer perspective regarding the issues surrounding provision of genetic services. Often dependent upon support from private and public health programs, consumers are routinely challenged to obtain adequate access to the diagnostic and counseling services which constitute optimum care in the context of modern medicine. Moreover, the cost of services, which may not be covered by third-party payers, adds significantly to the dilemma faced by patients searching for genetic services with limited financial resources. Therefore, the following articles also provide the medical professional and the consumer with insight into the many questions surrounding fiscal responsibility for special-needs patients, the emotional and legal impact of genetic services on the patient and their family, the social responsibility of providers to equalize access, and the realities of cost and reimbursement.
Our thanks to the guest contributors for sharing their experience and perspectives. References to additional information and resources, including website referrals, are listed at the conclusion of the issue.
This issue of the Genetic Drift was supported in part with a donation from the Sons of Italy 2075 of Denver, Colorado.
The Genetic Drift Newsletter is not copyrighted. Readers are free to duplicate all or parts of its contents. The Genetic Drift Newsletter is published semiannually by the Mountain States Genetics Network for associates & those interested in Human Genetics. In accordance with accepted publication standards, we request acknowledgement in print of any article reproduced in another publication. The views expressed in the newsletter do not necessarily reflect local, state, or federal policy. For additional information, contact Carol Clericuzio, M.D., Editor, Department of Pediatrics, The University of New Mexico, Albuquerque, NM, 87131
Introduction
Implications of Testing for Professionals
Difficulties in the Diagnosis of Genetic Disorders
Clergy Response to Genetic Issues in Counseling
Providing for Extended Care: The Montana Self-Sufficiency
Trust
Patient
Realities in Genetic Testing
Patient Perspective on Social Security
Systems Advocacy
Genetics and Managed Care
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