The protection of genetic information about an individual, family, or population group, from unauthorized disclosure.
The state of being free from intrusion or disturbance in one's private life or affairs. (Random House Unabridged Dictionary, 2d ed, 1993)
The privacy of information and its protection against unauthorized disclosure.
Protective measures against unauthorized access to or interference with computer operating systems, telecommunications, or data structures, especially the modification, deletion, destruction, or release of data in computers. It includes methods of forestalling interference by computer viruses or so-called computer hackers aiming to compromise stored data.
Public Law 104-91 enacted in 1996, was designed to improve the efficiency and effectiveness of the healthcare system, protect health insurance coverage for workers and their families, and to protect individual personal health information.
Longitudinal patient-maintained records of individual health history and tools that allow individual control of access.
Revealing of information, by oral or written communication.
Computer-based systems for input, storage, display, retrieval, and printing of information contained in a patient's medical record.
Facilities that collect, store, and distribute tissues, e.g., cell lines, microorganisms, blood, sperm, milk, breast tissue, for use by others. Other uses may include transplantation and comparison of diseased tissues in the identification of cancer.
Legal guarantee protecting the individual from attack on personal liberties, right to fair trial, right to vote, and freedom from discrimination on the basis of race, color, religion, sex, age, disability, or national origin. (from http://www.usccr.gov/ accessed 1/31/2003)
Regulations to assure protection of property and equipment.
Voluntary authorization, by a patient or research subject, with full comprehension of the risks involved, for diagnostic or investigative procedures, and for medical and surgical treatment.
Management of the acquisition, organization, retrieval, and dissemination of health information.
Media that facilitate transportability of pertinent information concerning patient's illness across varied providers and geographic locations. Some versions include direct linkages to online consumer health information that is relevant to the health conditions and treatments related to a specific patient.
The freedom of patients to review their own medical, genetic, or other health-related records.
Fundamental claims of patients, as expressed in statutes, declarations, or generally accepted moral principles. (Bioethics Thesaurus) The term is used for discussions of patient rights as a group of many rights, as in a hospital's posting of a list of patient rights.

Persons and their copies. (1/105)

Is cloning human beings morally wrong? The basis for the one serious objection to cloning is that, because of what a clone is, clones would have much worse lives than non-clones. I sketch a fragment of moral theory to make sense of the objection. I then outline several ways in which it might be claimed that, because of what a clone is, clones would have much worse lives than non-clones. In particular, I look at various ideas connected with autonomy. I conclude that there is no basis to the claim that, because of what a clone is, clones would have much worse lives than non-clones. I therefore reject the claim that cloning human beings is morally wrong.  (+info)

Genetic privacy: orthodoxy or oxymoron? (2/105)

In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced.  (+info)

Genetic testing: a conceptual exploration. (3/105)

This paper attempts to explore a number of conceptual issues surrounding genetic testing. It looks at the meaning of the terms, genetic information and genetic testing in relation to the definition set out by the Advisory Committee on Genetic Testing in the UK, and by the Task Force on Genetic Testing in the USA. It argues that the special arrangements that may be required for the regulation of genetic tests should not be determined by reference to the nature or technology of the test, but by considering those morally relevant features that justify regulation. Failure to do so will lead to the regulation of genetic tests that need not be regulated, and would fail to cover other tests which should be regulated. The paper also argues that there is little in the nature of the properties of gene tests, using DNA or chromosomes, that in itself justifies a special approach.  (+info)

Genetics and the British insurance industry. (4/105)

Genetics and genetic testing raise key issues for insurance and employment. Governmental and public concern galvanised the British insurance industry into developing a code of practice. The history of the development of the code, issues of genetic discrimination, access to medical information, consent and the dangers of withholding information and the impact on the equity of pooled risk are explored. Proactive steps by the Association of British Insurers suggest that moral reflection not legislation is the way forward.  (+info)

Should we genetically test everyone for haemochromatosis? (5/105)

The increasing availability of DNA-based diagnostic tests has raised issues about whether these should be applied to the population at large in order to identify, treat or prevent a range of diseases. DNA tests raise concerns in the community for several reasons. There is the possibility of stigmatisation and discrimination between those who test positive and those who don't. High-risk individuals may be identified for whom no proven effective intervention is possible, or conversely may test "positive" for a disease that does not eventuate. Controversy concerning prenatal diagnosis and termination of affected pregnancies may arise. Haemochromatosis, however, is a disease that is not only treatable but also preventable if those at high risk are identified presymptomatically. This paper will identify and discuss key issues regarding DNA-based population screening for haemochromatosis, and argue that population-based genetic screening for haemochromatosis should be supported when a number of contentious issues are addressed. In the context of a health system with limited resources haemochromatosis is the paradigm of a disorder where there is an ethical and clinical imperative to encourage presymptomatic DNA testing for all in ethnically relevant communities.  (+info)

Genetic medicine: an experiment in community-expert interaction. (6/105)

This project tested a two-way model of communication between lay groups and experts about genetic medicine in Perth, Western Australia. Focus group discussion with community group participants was followed by a communication workshop between community group participants and experts. Four groups of concerns or themes emerged from discussion: clinical considerations; legislative concerns; research priorities, and ethical and wider considerations. Community group concerns are not always met by the actions of "experts". This is, in part, because of the differing life-worlds of each group. However, the communication workshop showed the potential of two-way communication for both lay and expert members in understanding the others' viewpoint. Further, the approach developed here offers one possible way for community groups to participate in a substantial way in policy formulation processes.  (+info)

Who should know about our genetic makeup and why? (7/105)

Recent developments in biology have made it possible to acquire more and more precise information concerning our genetic makeup. Although the most far-reaching effects of these developments will probably be felt only after the Human Genome Project has been completed in a few years' time, scientists can even today identify a number of genetic disorders which may cause illness and disease in their carriers. The improved knowledge regarding the human genome will, it is predicted, in the near future make diagnoses more accurate and treatments more effective, and thereby considerably reduce and prevent unnecessary suffering. On the other hand, however, the knowledge can also be, depending on the case, futile, distressing or plainly harmful. This is why we propose to answer in this paper the dual question: who should know about our genetic makeup and why? Through an analysis of prudential, moral and legal grounds for acquiring the information, we conclude that, at least on the levels of law and social policy, practically nobody is either duty-bound to receive or entitled to have that knowledge.  (+info)

The "new genetics": an ethical perspective from family practice. (8/105)

The new genetic technologies are becoming increasingly applicable to clinical medicine. At present, however, diagnostic capabilities far exceed treatment options. Pregnancy termination, with its attendant moral-ethical problems, remains the major therapeutic option for mothers bearing fetuses with genetic abnormalities. In this article, the author outlines the major ethical issues facing family physicians, in the context of our expanding genetic diagnostic and therapeutic capabilities, and their possible effects on the traditional physician-patient relationship.  (+info)

Genetic privacy is the right to control access to and use of one's genetic information. It refers to the protection of an individual's genetic data from unauthorized or unwanted disclosure, collection, storage, use, or dissemination. Genetic privacy is a subset of medical privacy and is becoming increasingly important as advances in genetic testing and research make it possible to identify and analyze an individual's DNA.

Genetic information can reveal sensitive personal details about an individual's health status, ancestry, and susceptibility to certain diseases. As such, the unauthorized disclosure or misuse of this information can have serious consequences for an individual's privacy, employment opportunities, insurance coverage, and overall well-being. Therefore, genetic privacy is a critical component of medical ethics and healthcare policy, and it is protected by various laws and regulations in many countries around the world.

In the context of healthcare, privacy is often referred to as the state of being free from unauthorized intrusion or observation in regards to one's personal health information. This includes maintaining confidentiality, restricting access to only those who have a legitimate need for the information, and protecting the information from being shared, disclosed, or used inappropriately. It is a fundamental right of individuals and is essential for maintaining trust in the healthcare system.

Confidentiality is a legal and ethical principle in medicine that refers to the obligation of healthcare professionals to protect the personal and sensitive information of their patients. This information, which can include medical history, diagnosis, treatment plans, and other private details, is shared between the patient and the healthcare provider with the expectation that it will be kept confidential and not disclosed to third parties without the patient's consent.

Confidentiality is a fundamental component of the trust relationship between patients and healthcare providers, as it helps to ensure that patients feel safe and comfortable sharing sensitive information with their doctors, nurses, and other members of their healthcare team. It also helps to protect patients' privacy rights and uphold their autonomy in making informed decisions about their healthcare.

There are some limited circumstances in which confidentiality may be breached, such as when there is a legal obligation to report certain types of information (e.g., suspected child abuse or neglect), or when the disclosure is necessary to protect the health and safety of the patient or others. However, these exceptions are typically narrowly defined and subject to strict guidelines and safeguards to ensure that confidentiality is protected as much as possible.

Computer security, also known as cybersecurity, is the protection of computer systems and networks from theft, damage, or unauthorized access to their hardware, software, or electronic data. This can include a wide range of measures, such as:

* Using firewalls, intrusion detection systems, and other technical safeguards to prevent unauthorized access to a network
* Encrypting sensitive data to protect it from being intercepted or accessed by unauthorized parties
* Implementing strong password policies and using multi-factor authentication to verify the identity of users
* Regularly updating and patching software to fix known vulnerabilities
* Providing security awareness training to employees to help them understand the risks and best practices for protecting sensitive information
* Having a incident response plan in place to quickly and effectively respond to any potential security incidents.

The goal of computer security is to maintain the confidentiality, integrity, and availability of computer systems and data, in order to protect the privacy and safety of individuals and organizations.

The Health Insurance Portability and Accountability Act (HIPAA) is a US law designed to provide privacy standards to protect patients' medical records and other health information. It sets limits on who can look at and receive your protected health information (PHI), such as doctors, hospitals and healthcare clearinghouses. It also gives patients more control over their health information by setting rules for how it can be used or disclosed. Additionally, HIPAA establishes penalties for violations of the privacy rule.

HIPAA is enforced by the Department of Health and Human Services' Office for Civil Rights (OCR). It applies to covered entities, such as healthcare providers, health plans, and healthcare clearinghouses, that handle protected health information. Business associates of these covered entities, such as claims processing companies, also must comply with HIPAA regulations.

HIPAA is composed of several rules, including the Privacy Rule, Security Rule, Breach Notification Rule, and Enforcement Rule. These rules establish national standards for the protection of certain health information. The Privacy Rule establishes guidelines for how protected health information can be used and disclosed, while the Security Rule sets forth requirements for protecting electronic PHI. The Breach Notification Rule requires covered entities to notify affected individuals, the Secretary of HHS, and in some cases the media, following a breach of unsecured PHI. The Enforcement Rule provides for investigations and penalties for violations of the HIPAA rules.

In summary, HIPAA is a US law that establishes national standards to protect individuals' medical records and personal health information by setting guidelines for how it can be used and disclosed, as well as requirements for protecting electronic PHI. It applies to healthcare providers, health plans, and healthcare clearinghouses, as well as their business associates.

Personal Health Records (PHRs) are defined as:

"An electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment." (Institute of Medicine, 2011)

PHRs typically contain personal health information such as medical history, medication lists, allergies, test results, and other relevant health data. They can be managed and controlled by the individual and may be connected to or separate from electronic health records maintained by healthcare providers. PHRs allow individuals to have more active roles in managing their own health and communicating with their healthcare team.

In medical terms, disclosure generally refers to the act of revealing or sharing confidential or sensitive information with another person or entity. This can include disclosing a patient's medical history, diagnosis, treatment plan, or other personal health information to the patient themselves, their family members, or other healthcare providers involved in their care.

Disclosure is an important aspect of informed consent, as patients have the right to know their medical condition and the risks and benefits of various treatment options. Healthcare providers are required to disclose relevant information to their patients in a clear and understandable manner, so that they can make informed decisions about their healthcare.

In some cases, disclosure may also be required by law or professional ethical standards, such as when there is a legal obligation to report certain types of injuries or illnesses, or when there is a concern for patient safety. It is important for healthcare providers to carefully consider the potential risks and benefits of disclosure in each individual case, and to ensure that they are acting in the best interests of their patients while also protecting their privacy and confidentiality.

A Computerized Medical Record System (CMRS) is a digital version of a patient's paper chart. It contains all of the patient's medical history from multiple providers and can be shared securely between healthcare professionals. A CMRS includes a range of data such as demographics, progress notes, problems, medications, vital signs, past medical history, immunizations, laboratory data, and radiology reports. The system facilitates the storage, retrieval, and exchange of this information in an efficient manner, and can also provide decision support, alerts, reminders, and tools for performing data analysis and creating reports. It is designed to improve the quality, safety, and efficiency of healthcare delivery by providing accurate, up-to-date, and comprehensive information about patients at the point of care.

A Biological Specimen Bank, also known as a biobank or tissue bank, is a type of medical facility that collects, stores, and distributes biological samples for research purposes. These samples can include tissues, cells, DNA, blood, and other bodily fluids, and are often collected during medical procedures or from donors who have given their informed consent. The samples are then cataloged and stored in specialized conditions to preserve their quality and integrity.

Biobanks play a critical role in advancing medical research by providing researchers with access to large numbers of well-characterized biological samples. This allows them to study the underlying causes of diseases, develop new diagnostic tests and treatments, and evaluate the safety and effectiveness of drugs and other therapies. Biobanks may be established for specific research projects or as part of larger, more comprehensive efforts to build biomedical research infrastructure.

It is important to note that the use of biological specimens in research is subject to strict ethical guidelines and regulations, which are designed to protect the privacy and interests of donors and ensure that the samples are used responsibly and for legitimate scientific purposes.

Civil rights are a group of rights and protections that guarantee equal treatment to all individuals, regardless of their race, color, religion, sex, national origin, age, disability, or other characteristics. These rights are enshrined in the laws and constitutions of various countries and include freedoms such as the right to vote, the right to a fair trial, the right to equal protection under the law, and the right to freedom of speech, religion, and assembly.

In the United States, the Civil Rights Act of 1964 is a landmark piece of legislation that prohibits discrimination on the basis of race, color, religion, sex, or national origin in employment, education, and access to public accommodations. Other important civil rights laws in the U.S. include the Voting Rights Act of 1965, which protects the right to vote, and the Americans with Disabilities Act of 1990, which prohibits discrimination against people with disabilities.

Violations of civil rights can take many forms, including discrimination, harassment, intimidation, and violence. Those whose civil rights have been violated may be entitled to legal remedies, such as damages, injunctions, or orders for relief.

I'm sorry for any confusion, but "security measures" is not a term that has a specific medical definition. It is a more general term that can be applied to various fields, including healthcare, and refers to the steps or actions taken to protect individuals, data, or systems from harm or unauthorized access. In a medical context, security measures might include things like physical security measures to protect patients and staff (such as locks on doors and surveillance cameras), as well as cybersecurity measures to protect patient data (such as encryption and firewalls).

Informed consent is a process in medical care where patients are provided with all relevant information about their health status, proposed treatments, potential risks and benefits, and alternative options. This allows patients to make informed decisions regarding their healthcare and understand the consequences of their choices. The process includes ensuring that the patient has adequate mental capacity to make such decisions, is fully aware of the implications, and gives their voluntary agreement for the proposed treatment or procedure. It's a fundamental principle in medical ethics and is required by law in many jurisdictions to protect patients' rights.

Health Information Management (HIM) is the practice of acquiring, analyzing, and protecting digital and traditional medical data for the purpose of ensuring accurate and timely health care services, conducting research, and making informed decisions. It involves the use of various technologies, standards, and policies to manage health information and communicate it effectively among healthcare professionals, patients, and other stakeholders. HIM professionals include health information technicians, coders, managers, and analysts who work in hospitals, clinics, physician practices, government agencies, and other healthcare settings.

An Electronic Health Record (EHR) is a digital version of a patient's medical history that is stored and maintained electronically rather than on paper. It contains comprehensive information about a patient's health status, including their medical history, medications, allergies, test results, immunization records, and other relevant health information. EHRs can be shared among authorized healthcare providers, which enables better coordination of care, improved patient safety, and more efficient delivery of healthcare services.

EHRs are designed to provide real-time, patient-centered records that make it easier for healthcare providers to access up-to-date and accurate information about their patients. They can also help reduce errors, prevent duplicative tests and procedures, and improve communication among healthcare providers. EHRs may include features such as clinical decision support tools, which can alert healthcare providers to potential drug interactions or other health risks based on a patient's medical history.

EHRs are subject to various regulations and standards to ensure the privacy and security of patients' health information. In the United States, for example, EHRs must comply with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, which sets national standards for the protection of personal health information.

Patient access to records refers to the ability of patients to view, obtain copies, and/or request amendments to their own medical records maintained by healthcare providers or organizations. This right is based on the principle that patients have a legal and ethical right to access their personal health information, which enables them to be actively involved in their healthcare decisions, ensure accuracy of their records, and facilitate continuity of care.

Patient access to records typically includes various types of medical information such as diagnoses, medications, treatment plans, laboratory test results, immunization records, and other relevant documentation. Access may be provided through various means, including online patient portals, paper copies, or electronic files, depending on the policies and practices of the healthcare organization.

In many jurisdictions, patient access to records is protected by laws and regulations that govern the privacy and security of personal health information. Healthcare providers are required to establish procedures for patients to request and receive access to their medical records in a timely and secure manner, while also ensuring that appropriate safeguards are in place to protect the confidentiality of sensitive medical information.

Patient rights refer to the ethical principles, legal regulations, and professional guidelines that protect and ensure the autonomy, dignity, and well-being of patients during healthcare encounters. These rights encompass various aspects of patient care, including informed consent, privacy, confidentiality, access to medical records, freedom from abuse and discrimination, pain management, and communication with healthcare providers.

The specific components of patient rights may vary depending on the jurisdiction and legal framework but generally include:

1. Right to receive information: Patients have the right to obtain accurate, clear, and comprehensive information about their health status, diagnosis, treatment options, benefits, risks, and prognosis in a manner they can understand. This includes the right to ask questions and seek clarification.
2. Informed consent: Patients have the right to make informed decisions about their care based on complete and accurate information. They must be given sufficient time and support to consider their options and provide voluntary, informed consent before any treatment or procedure is performed.
3. Privacy and confidentiality: Patients have the right to privacy during medical examinations and treatments. Healthcare providers must protect patients' personal and medical information from unauthorized access, disclosure, or use.
4. Access to medical records: Patients have the right to access their medical records and obtain copies of them in a timely manner. They can also request amendments to their records if they believe there are errors or inaccuracies.
5. Freedom from discrimination: Patients have the right to receive care without discrimination based on race, ethnicity, national origin, religion, sex, sexual orientation, gender identity, age, disability, or socioeconomic status.
6. Pain management: Patients have the right to appropriate pain assessment and management, including access to palliative and hospice care when appropriate.
7. Refusal of treatment: Patients have the right to refuse any treatment or procedure, even if it may be life-saving, as long as they are competent to make that decision and understand the consequences.
8. Communication and language assistance: Patients have the right to clear, effective communication with their healthcare providers, including access to interpreters or other necessary language assistance services.
9. Respect and dignity: Patients have the right to be treated with respect, dignity, and consideration during all aspects of their care.
10. Complaint resolution: Patients have the right to voice concerns about their care and receive timely responses from healthcare providers or institutions. They also have the right to file complaints with regulatory bodies if necessary.

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