Biobanks serve as essential resources for genetic and public health research, including studies of associations between genotypes, measures of environmental exposures, and lifestyle factors, which can improve our understanding of cancer susceptibility and support the development of novel cancer surveillance, diagnostic, and therapeutic efforts.2 However, recent discussion have focused our attention of the present social, legal and ethical challenges, surrounding biobanks. These challenges include collection of biospecimens; linking samples to personal information; informed consent; governance of biospecimen data. (odoherty) Ethical framework has been the most controversial. Thus, there is a substantial literature focusing on ethical dilemas …show more content…
It has been widely observed that breach of privacy protection is associated as being the major violation in biobanks (6). As previously mentioned, research informed consent document should include a description of possible use of the specimen upon collection. Most biobanks, are comprised of samples that are earmarked for future research use. These samples also often contain sensitive donor information that may be linked to identifiable medical records. These types of sample tend to involve a separation of the sample collection process. Therefore, the link between biospecimen sample and individual identification presents serious threats to individual privacy. Breach of biobank and privacy data protect can not only harm individuals but also whole groups based off of various social and demographic factors. Some whole groups may feel stigmatized as a result due to the sensitive information that is associated with the biospecimen samples. Biobanks that rely on specific racial/ethnic populations must take extreme precaution when publishing data due to the heavily documented historical accounts of mistreatment of research participants of certain racial/ethnic
In today’s modern age science is moving at a rapid pace; one of those scientific fields that has taken the largest leaps is that of genetics. When genetics first comes to mind, many of us think of it as a type of science fiction, or a mystical dream. Yet genetics is here, it is real, and has numerous ethical implications.
They claim the reason these conflicts are brought to court is because of confusion over who has the rights of the samples so if there were laws about tissue samples and research there wouldn’t be as much confusion (Gantz 301). One example of this confusion is William Catalona, a prostate cancer researcher at Washington University. Caralona decided to leave Washington University and research at Northwestern University. Gantz and co-authors note, before leaving, Catalona sent out consent forms to the patient’s whom he had tissue and/or blood samples from saying “I have donated a tissue and/or blood sample for Dr. William J. Catalona's research studies. Please release all samples to Dr. Catalona at Northwestern University upon his request. I have entrusted these samples to Dr. Catalona to be used only at his direction and with his express consent for research projects" (Gantz 300). They go on to note, nearly 6,000 people returned consent forms and Washington University filed a lawsuit against Catalona claiming the University had rights to the tissue/blood (Gantz 300). Gantz, Roche, and George include this story to show that after the tissue leaves the body, it’s hard to tell who “owns” or has rights to
The public should be aware of what could happen if this kind of information became public knowledge, and of the opportunities that the knowledge brings. There is no doubt that the information from genetic analysis is going to help a lot of people with all sorts of problems live longer and healthier lives. The only problem is that we have to keep the information in the hands of those who need it, and out of the hands of those who would use the information to profit or discriminate.
Introduction During the process of research, professionals collect data or identifiable private information through intervention or interaction. While this is a vital part of the scientific and medical fields, every precaution must be taken by researchers to protect the participants' rights. Ethics, outlined by the Belmont report; requirements, described by the Department of Health and Human Services (DHHS); and regulations, laid out by the Food and Drug Administration (FDA) are verified by an Institutional Review Board (IRB). This procedure ensures that all human rights are safeguarded during the entire research process. The Institutional Review Board The IRB is an administrative body which has been established to make sure research participants' rights are protected.
The more we know about genetics and the building blocks of life the closer we get to being capable of cloning a human. The study of chromosomes and DNA strains has been going on for years. In 1990, the Unites States Government founded the Human Genome Project (HGP). This program was to research and study the estimated 80,000 human genes and determine the sequences of 3 billion DNA molecules. Knowing and being able to examine each sequence could change how humans respond to diseases, viruses, and toxins common to everyday life. With the technology of today the HGP expects to have a blueprint of all human DNA sequences by the spring of 2000. This accomplishment, even though not cloning, presents other new issues for individuals and society. For this reason the Ethical, Legal, and Social Implications (ELSI) was brought in to identify and address these issues. They operate to secure the individuals rights to those who contribute DNA samples for studies. The ELSI, being the biggest bioethics program, has to decide on important factors when an individual’s personal DNA is calculated. Such factors would include; who would have access to the information, who controls and protects the information and when to use it? Along with these concerns, the ESLI tries to prepare for the estimated impacts that genetic advances could be responsible for in the near future. The availability of such information is becoming to broad and one needs to be concerned where society is going with it.
My brother deserves to die. My grandmother should have died sooner than she did. My brother is autistic, cannot speak, and cannot even completely dress himself-he makes no visible contribution to society-therefore he should not be allowed to live. My grandmother had Alzheimer's disease, slipped into a coma after Valentine's Day, and was placed on a feeding tube until she finally passed on two days before my 16th birthday-but she should not have been allowed to waste my family's money and stay in the hospital for weeks. My family should have just let her die and get over with it.
Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule, NIH Publication Number 03-5388. Retrieved November 12, 2011 from http://privacyruleandresearch.nih.gov/pr_02.asp
The genetic technology revolution has proved to be both a blessing and a blight. The Human Genome Project is aimed at mapping and sequencing the entire human genome. DNA chips are loaded with information about human genes. The chip reveals specific information about the individuals’ health and genetic makeup (Richmond & Germov 2009).The technology has been described as a milestone by many in that it facilitates research, screening, and treatment of genetic conditions. However, there have been fears that the technology permits a reduction in privacy when the information is disclosed. Many argue that genetic information can also be used unfairly to discriminate against or stigmatize individuals (Willis 2009).
The Human Genome Project is the largest scientific endeavor undertaken since the Manhattan Project, and, as with the Manhattan Project, the completion of the Human Genome Project has brought to surface many moral and ethical issues concerning the use of the knowledge gained from the project. Although genetic tests for certain diseases have been available for 15 years (Ridley, 1999), the completion of the Human Genome Project will certainly lead to an exponential increase in the number of genetic tests available. Therefore, before genetic testing becomes a routine part of a visit to a doctor's office, the two main questions at the heart of the controversy surrounding genetic testing must be addressed: When should genetic testing be used? And who should have access to the results of genetic tests? As I intend to show, genetic tests should only be used for treatable diseases, and individuals should have the freedom to decide who has access to their test results.
In this diverse society we are confronted everyday with so many ethical choices in provision of healthcare for individuals. It becomes very difficult to find a guideline that would include a border perspective which might include individual’s beliefs and preference across the world. Due to these controversies, the four principles in biomedical ethic which includes autonomy, beneficence, non-maleficence and justice help us understand and explain which medical practices are ethical and acceptable. These principles are not only used to protect the rights of a patient but also the physician from being violated.
There is very much controversy surrounding the case of the very popular Henrietta Lacks. One of the major implications on the situation that people have a problem with is the lack of consent obtained by Johns Hopkins University and the doctors involved. All though it was not common place as it is in today’s society, many feel that it was not ethical to perform medical procedures without the patient and their family being given all of the knowledge regarding the situation. The tissue sample taken by doctor Howard W. Jones was unbeknown to the family which violates the ethical respect for the person that should be held. A sample of someone’s DNA is not anything that should be taken lightly or regarded as unimportant. It should have been a decision made by Henrietta, and had she of known of the procedure she may have voted against donating to research. This lack of incorporating Henrietta and her family caused there to be a dismal amount of respect for persons shown by the University and all
In today’s world, people are learning a great deal in the rapidly growing and developing fields of science and technology. Almost every day, an individual can see or hear about new discoveries and advances in these fields of study. One science that is rapidly progressing is genetic testing; a valuable science that promotes prevention efforts for genetically susceptible people and provides new strategies for disease management. Unnaturally, and morally wrong, genetic testing is a controversial science that manipulates human ethics. Although genetic testing has enormous advantages, the uncertainties of genetic testing will depreciate our quality of life, and thereby result in psychological burden, discrimination, and abortion.
The case of Dr. Lowell and Mrs. Jackson revolves around a conflict between the doctor, who advocates the implementation of a particular treatment and the patient who disagrees with the doctor and wishes to do things her own way. The doctor feels that the suggested course of action is disastrous and threatens to have the patient declared mentally incompetent. The question now is whether or not the doctor is morally justified in taking action against the patient in order to implement the course of treatment she feels would be most effective. Is this an infringement on the autonomy of the patient or is the doctor morally obliged to do everything that he/she can possible do in order to restore the patient’s health even if that includes to go so far as to take this decision out of the hands of the patient?
Health care and research are no longer two different paths, but instead because the emphasis on reducing cost and increasing quality outcomes they are converging to make a LHCS. With the introduction of LHCS’s, research and treatment will converge into a new way of managing patient data. Expansion of technology and increased patient involvement in their health care will continue to create the need to reassess what privacy and confidentiality look like to the patient, researcher, practitioner, health plan and other business
Data privacy issues arise in wide range of areas such as healthcare records, financial information, regarding genetic material in biology, geographical records, criminal justice and investigations and also in the use of