Since the effectuation of a new bioethical law, the number of registered genetic testing laboratories in Korea has reached about one hundred and seventy, as of June 2006. For the purpose of supervision and quality control of these laboratories the Korean Institute of Genetic Testing and Evaluation (KIGTE) was founded in October 2005 with the support of the Korean Government. KIGTE will perform its task by establishing a proficiency testing program and on-site inspection program in the near future. At this moment, however, the ambiguous definition of genetic testing, hasty entry of research tests into clinical practice, unpreparedness of some non-medical commercial laboratories for systematic quality assurance programs, and the risk of violating privacy related to genetic testing are major issues to be solved.
Genetic Testing* ; Jurisprudence ; Korea* ; Organization and Administration ; Privacy ; Quality Control

As genetic information is not changeable lifelong and might be used as disease predictors in a family, it requires special protection. Private genetic information is kind of individually identifiable health information, also known as 'protected health information (PHI)', which consists of individual identifier and individuals' health information. The removal of individual identifier from PHI is called 'deidentification'. For every institute that deals with PHI, the deidentification process and designation of a privacy official responsible for the implementation of privacy procedures could be urgent and practical strategies for protecting the privacy in genetic testing. However, for better patient care, deidentification would not be recommended when PHI flows among medical staffs.
Genetic Testing* ; Humans ; Medical Staff ; Patient Care ; Privacy*

OBJECTIVES: The Korean government has enacted two laws, namely, the Personal Information Protection Act and the Bioethics and Safety Act to prevent the unauthorized use of medical information. To protect patients' privacy by complying with governmental regulations and improve the convenience of research, Asan Medical Center has been developing a de-identification system for biomedical research. METHODS: We reviewed Korean regulations to define the scope of the de-identification methods and well-known previous biomedical research platforms to extract the functionalities of the systems. Based on these review results, we implemented necessary programs based on the Asan Medical Center Information System framework which was built using the Microsoft. NET Framework and C#. RESULTS: The developed de-identification system comprises three main components: a de-identification tool, a search tool, and a chart review tool. The de-identification tool can substitute a randomly assigned research ID for a hospital patient ID, remove the identifiers in the structured format, and mask them in the unstructured format, i.e., texts. This tool achieved 98.14% precision and 97.39% recall for 6,520 clinical notes. The search tool can find the number of patients which satisfies given search criteria. The chart review tool can provide de-identified patient's clinical data for review purposes. CONCLUSIONS: We found that a clinical data warehouse was essential for successful implementation of the de-identification system, and this system should be tightly linked to an electronic Institutional Review Board system for easy operation of honest brokers. Additionally, we found that a secure cloud environment could be adopted to protect patients' privacy more thoroughly.
Access to Information ; Bioethics ; Computer Security ; Electronics ; Electrons ; Ethics Committees, Research ; Ethics, Research ; Humans ; Information Systems ; Jurisprudence ; Masks ; Privacy ; Research Design ; Social Control, Formal ; Tertiary Care Centers

Objective: A multi-phase, sequential mixed methods study aimed to determine acceptable age-appropriate physical intimate behaviors shared between Filipino parents and children that are related to hygiene, affection and privacy. Methods: Following an exploratory qualitative phase (Phase 1) and an instrumentation phase (Phase 2), the quantitative survey phase (Phase 3) utilized the resultant Filipino Family Behavior Questionnaire (FFBQ). A total of 145 participants from Cabuyao, Laguna and selected urban communities in Metro Manila were comprised of 72 parents and 73 adult children. Results: Parents and adult children view the affection-related behaviors of hugging (magyakapan/ magyapusan) and kissing on the cheeks (humalik sa pisngi) as most acceptable among the list of parent-child intimate behaviors in the FFBQ, and is allowed without any age limit set for children (up to age 18 years). The lowest accepted age-appropriate intimate behaviors were hygiene related, specifically on washing genitalia (median 5 years, range 0,18), co-bathing (3 years, range 0,18), and holding/kissing genitals (0, range 0,17). Generally, adult children accept higher age-limits compared to parent participants. Both groups placed higher age-acceptable limits on mothers compared to fathers. When comparing parent-child pairs, same-gender pairs have significantly higher age-acceptable limits compared to mixed gender pairs. Ranked in order of highest to lowest age-acceptable limits, the most accepted gender pair in performing intimate behavior is mother-daughter; father-son; mother-son; and father-daughter. Perceptions of acceptable age limits were comparable between parents with adverse childhood experiences (ACEs) compared to those without ACE, except for hugging between mother-daughter (17.21 vs 18 years, p=0.04) and father-daughter (17.21 vs 14.22 years, p<0.01) as well as co-dressing of mother-son (3.76 vs 2.19 years, p=0.02).For children, differences in perception were noted only for hugging between mother and son (17.95 vs 15.37 years, p<0.01), and kissing on lips between father and son (5.33 vs 8.94 years, p=0.03). Respondents in Phase 4 believe that mothers are seen as nurturing and caring towards children, thus rendering acceptance of higher age limits for engaging in intimate behavior, specifically for hygiene and privacy. Similar-gender pairs tend to be more at ease with each other, hence the persistence of intimate behavior even at older ages. Conclusion This study was able to identify Filipino intimate behaviors of parents and children including their age-appropriateness. Parents and adult children had similar valuations for healthy boundaries in intimate behavior, as evidenced by the older perceived mean ages for hugging, kissing on the cheek (affection) and co-sleeping (privacy), as well as younger perceived mean ages for hygiene-related intimate behavior such as holding/kissing genitalia, washing genitalia and co-bathing. Parent-child intimate behavior is more acceptable for same-gender pairs, and is least appropriate for older ages in father-daughter pairs. Moreover, adult children appear to be more permissible in exhibiting lower cutoffs for age limits of acceptability compared to parents.
Hygiene ; Affection ; Privacy

he successful completion of Human Genome Project (HGP) and further advances in genomic research and technology ushered a new era of genetic medicine in the 21st century. The discovery of a gene-disease association lays the groundwork for the development of a genetic test. Clinical applications of genetic information and tools have provided us with the ability to perform a wide range of DNA testing for the diagnosis of various genetic diseases in patients as well as predicting the disease and disease susceptibility among presymptomatic family members at risk. Thus, the introduction of a new genetic testing may have complex implications for patients, family members, and the society. Guidelines for genetic testing have been developed not only to insure the accuracy of testing with the analytical validity, clinical validity, and clinical utility itself, but also to provide an implicit guide to ethical, legal and social issues (ELSI). Non-directive genetic counseling prior to genetic testing can provide patients with clinical implications of testing in terms of its benefits as well as risks, and help the patient to prepare informed consent, while efforts are made to insure privacy and confidentiality of individual genetic information. Ensuring the appropriate use of genetic testing in Korean health delivery system requires multidisciplinary efforts for the development of practice guidelines and educational programs for clinical genetics professionals including genetic counselors as well as governmental regulatory implementation for ELSI of genetic testing.
Confidentiality ; Counseling ; Diagnosis ; Disease Susceptibility ; DNA ; Genetic Counseling* ; Genetic Testing* ; Genetics ; Human Genome Project ; Humans ; Informed Consent ; Privacy

There have been several success stories in the field of pharmacogenetics in recent years, including the analysis of HER2 amplification for trastuzumab selection in breast cancer and VKORC1 genotyping for warfarin dosing in thrombosis. Encouraging results from these studies suggest that genetic factors may indeed be important determinants of drug response and toxicity for at least some drugs. However, to apply pharmacogenetics appropriately, a thorough understanding of the scope and limitations of this field is required. The challenges include an appreciation of biological variability, logistical issues pertaining to the proper management of information, the need for robust methods and adequate sample quality with well-designed workflows. At the same time, the economics of pharmacogenetic testing from the perspective of clinicians, patients, governments, insurance companies and pharmaceutical companies will play an important role in determining its future use. Ethical considerations such as informed consent and patient privacy, as well as the role of regulatory bodies in addressing these issues, must be fully understood. Only once these issues are properly dealt with can the full benefits of pharmacogenetics begin to be realised.
Antineoplastic Agents ; pharmacology ; Genetic Privacy ; ethics ; Humans ; Informed Consent ; Neoplasms ; drug therapy ; Pharmacogenetics ; ethics ; methods ; Translational Medical Research ; methods

Unlike the classical genetic study which dealt with the mendelian inheritances of relatively small number of patients, the genetic epidemiology study needs the large scaled genetic data base. The main ethical and legal problems of these kinds of studies are research design, informed consent, long term follow-up of research subjects, data sharing and benefit sharing. Classically, the informed consent was an important right but if these kinds of large scaled and long period studies were involved, the newly developing rights should be more stressed. The bioethics and biosafety act and governmental regulations for the genetic study and gene bank also shows those considerations. In EU, the general consent is considered acceptable if the approval of all future projects is fulfilled by a research ethics committee and the participants' right to withdraw samples at any times. In U.S.A., strict restriction is required for future experiments, but if the research involves no more than minimal risk to the subject, the waiver or alternation will not affect adversely the rights and welfare of subjects and the research could not be practicably carried out without the waiver or alteration, the specific future consents could be exempted. Long term follow up of research patients is needed to provide the newly developed information which would be helpful for the patients. Data sharing is needed to prevent the exclusive possession of genetic information. Benefit sharing is the newly coming up debates on how to manage the conflicts of interests between tissue-donors and scientific researchers. The context and inventory of human rights for the research is changing and still under construction.
Bioethics* ; Databases, Genetic ; Epidemiology ; Ethics Committees, Research ; Follow-Up Studies ; Human Rights ; Humans ; Information Dissemination ; Informed Consent ; Molecular Epidemiology* ; Privacy* ; Research Design ; Research Subjects ; Social Control, Formal ; Wills

OBJECTIVE: If medical information is integrated for management purposes, the efficiency of the system may increase. In addition, diagnostic abilities of physicians may be improved through the increased speed and accuracy of information processing. Medical databases must ensure high performance in terms of speed and reliability. In addition, access to medical information must be restricted to persons with proper authorization to ensure the privacy of patients. METHODS: Thus, the security of medical database systems with multiversion data requires both the existing management system and security policies. RESULTS: This study simulates the performance of a dynamic multiversion data management system in terms of security levels and update operations. CONCLUSION: The results show that a dynamic multiversion data management system increases disk availability more than a double version system. In addition, if the number of security levels is small, throughput will be improved because the security overhead will be low. However, frequent update operations will decrease throughput whenever versions are created at each interval.
Automatic Data Processing ; Dietary Sucrose ; Humans ; Privacy

PURPOSE: This study was conducted in the base hospital of Tangalle, Sri Lanka, in order to improve a new emergency operating system. METHODS: Emergency staff and patients were surveyed based on the five point Likert scale. Doctors and nurses were asked to rate their level of satisfaction regarding their relationship with patients. Patients were asked to rate their level of satisfaction with doctors, facilities, and the environment in the hospital. RESULTS: Doctors were overall satisfied with their job, scoring an average of 3.7. They were displeased with limitation of autonomous decision making on medical treatment, which they gave a score of 2.80. Nurses were generally satisfied with emergency services, with a score of 4.53. Nurses feel discomfort in non-specialized training (3.02). They also sense a lack of opportunities in their hospital (3.12). Patients' findings indicate that most patients were satisfied (4.2) and were displeased with wait time (3.429) and the attention that was given to each patient (3.92). When asked if they would recommend their physician to others and were willing to come back to their physician, outcomes were generally positive, receiving scores of 4.1, respectively. CONCLUSION: Findings showed that in order to create a well-structured system in the emergency centers around the Tangalle area, it is crucial to meet the needs of both patients and the emergency staff. Patients must have a sense of rapid treatment as well as privacy. Training should be provided to the staff so that they are better informed in quality care and up to date on recent studies.
Decision Making ; Emergencies* ; Humans ; Privacy ; Sri Lanka*

CONTEXT: Evolution of the scope and context of privacy and confidentiality brought about by use of information and communications technology in healthcare.

OBJECTIVE: To review the legal, professional and ethical landscape of health information privacy in the Philippines.

METHODOLOGY: Systematic review of literature and policy frameworks.

RESULTS: Philippine laws jurisprudence recognize and protect privacy of health information as a general rule; impose upon individual practitioners and institutions the obligation to uphold such right; and may apply in both the traditional and eHealth milieu. There is no existing policy framework that addresses issues relating to [a] access to health information by non-health professionals, [b] use of health information for non-health purposes, and [c] rules relating to collection, storage and utilization of electronically-derived or -stored information. A privacy culture, on either the provider's or client's side, is also lacking in the country.

CONCLUSION: Technological developments have outpaced policy and practice. There is a need to unify the patchwork of regulations governing the privacy of health information; advocate for a privacy culture among professionals and patients alike; fortify the evidence base on patient and provider perceptions of privacy; and develop and improve standards and systems to promote health information privacy at the individual and institutional levels.