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Articles 1 - 19 of 19
Full-Text Articles in Medicine and Health Sciences
Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter
Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter
Manuscripts, Articles, Book Chapters and Other Papers
Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their …
Pornography As A Public Health Issue: Promoting Violence And Exploitation Of Children, Youth, And Adults, Elisabeth Taylor
Pornography As A Public Health Issue: Promoting Violence And Exploitation Of Children, Youth, And Adults, Elisabeth Taylor
Dignity: A Journal of Analysis of Exploitation and Violence
The pornography industry is expanding exponentially as a result of ongoing technological advances. The ability to stream videos over the internet and the ubiquity of the smart phone have meant that pornography producers are able to use algorithms to target potential consumers, to cultivate new sexual tastes and to deliver content to a more diverse audience over mobile devices. The advent of virtual reality pornography with interactive sex toys and sex robots imbued with artificial intelligence promises to unleash a further step-change in the extent to which pornography influences ‘real-world’ sexual culture. The critical analysis of pornography undertaken over decades …
Missing The 'Target': Preventing The Unjust Inclusion Of Vulnerable Children For Medical Research Studies, Ruqaiijah Yearby
Missing The 'Target': Preventing The Unjust Inclusion Of Vulnerable Children For Medical Research Studies, Ruqaiijah Yearby
All Faculty Scholarship
The central purpose of medical research on children is to generate new knowledge that can improve children’s health, subject to ethical standards that promote justice. Incorporated in U.S. law, international law, and European Union law, the Justice Principle prohibits targeting in medical research, which is the selection of research subjects because of their manipulability and compromised position, rather than for reasons directly related to the problem being studied. Unfortunately, medical research studies involving children have too often violated the Justice Principle, by targeting children in a compromised position due to their health status and vulnerable to manipulability because of their …
The Injustice Of Inclusion And Fair Opportunity: Exploiting Children In Medical Research For The Benefit Of An Unworthy Society, Ruqaiijah Yearby
The Injustice Of Inclusion And Fair Opportunity: Exploiting Children In Medical Research For The Benefit Of An Unworthy Society, Ruqaiijah Yearby
All Faculty Scholarship
The history of pediatric medical research has been characterized as a history of child abuse. Usually, the debate regarding the use of children in medical research has centered on questions of Autonomy (informed consent) and Beneficence (the best interest of the child based on a benefit risk analysis). The debate has rarely focused on the question of which children should participate in medical research by discussing the legal principle of Justice (prohibits use of vulnerable populations for medical research who are already overly burdened for medical research unrelated to health issues affecting them and requires that populations who participate in …
Having Babies: Personhood Or Product?, Leanne N. Dykstra
Having Babies: Personhood Or Product?, Leanne N. Dykstra
CedarEthics: A Journal of Critical Thinking in Bioethics
One out of every six married couples experiences infertility at some point in their relationship. Most couples expect and desire to conceive children, and thus fulfill their “procreative duty.” However, this desire is interrupted by the pain of childlessness. Modern technology has responded through procedures such as artificial insemination or in vitro fertilization (IVF). If these technologies are successful, the result is procreation, and alleviation of human suffering. While this may appear wonderful on a surface level, it does raise questions of whether we have correctly defined procreation. Our culture and consumerist attitude has altered the God-intended views of procreation …
Having Babies: Personhood Or Product?, Leanne N. Dykstra
Having Babies: Personhood Or Product?, Leanne N. Dykstra
CedarEthics Online
No abstract provided.
Astrue V. Capato: Forcing A Shoe That Doesn't Fit, Courtney Hannon
Astrue V. Capato: Forcing A Shoe That Doesn't Fit, Courtney Hannon
Journal of Health Care Law and Policy
No abstract provided.
The Rationality And Morality Of Dying Children, Barry Hoffmaster
The Rationality And Morality Of Dying Children, Barry Hoffmaster
C. Barry Hoffmaster
Formal reason is not adequate to explain how we think through real-life problems and make moral decisions about them. A far richer account of rationality is necessary. Interviews conducted with children who have leukemia, and who must figure out by themselves that they are dying and how they should handle that information, illustrate a range on informal tools that must be part of that account.
Attitudes Of Parents At Risk Of Inheriting Li-Fraumeni Syndrome Towards Predictive Genetic Testing In Their Minor-Aged Children., Leslie A. Newman
Attitudes Of Parents At Risk Of Inheriting Li-Fraumeni Syndrome Towards Predictive Genetic Testing In Their Minor-Aged Children., Leslie A. Newman
Dissertations & Theses (Open Access)
Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome which predisposes individuals to cancer beginning in childhood. These risks are spread across a lifetime, from early childhood to adulthood. Mutations in the p53 tumor suppressor gene are known to cause the majority of cases of LFS. The risk for early onset cancer in individuals with Li-Fraumeni Syndrome is high. Studies have shown that individuals with LFS have a 90% lifetime cancer risk. Children under 18 have up to a 15% chance of cancer development. Effectiveness of cancer screening and management in individuals with Li-Fraumeni Syndrome is unclear. Screening for LFS-associated cancers …
Dead Men Reproducing: Responding To The Existence Of Afterdeath Children, Browne C. Lewis
Dead Men Reproducing: Responding To The Existence Of Afterdeath Children, Browne C. Lewis
Law Faculty Articles and Essays
The statutory mandates are a step in the right direction, but there is still work that needs to be done. The statutes should be amended to close certain loop holes and to ensure that the physician-facilitated suicide option is available to all of the patients who need it. Persons suffering from physical conditions that will lead to death within six months should not be the only persons permitted to exit gracefully. As long as the safeguards included in the statutes are followed, there is no good reason to prohibit persons suffering from irreversible and incurable physical diseases that lead to …
Research Involving Children: Regulations, Review Board, And Reform, Rupali Gandhi
Research Involving Children: Regulations, Review Board, And Reform, Rupali Gandhi
Journal of Health Care Law and Policy
No abstract provided.
Editor's Note, Padraig O'Malley
Editor's Note, Padraig O'Malley
New England Journal of Public Policy
This issue of the journal can be summed up in one word: provocative. At least two articles break new ground. Anthony Robbins and Phyllis Freeman explore the ways in which environmentally oriented public health is uniquely suited to help organized medical care in providing health and in restraining expenditures. Janet Farrell Smith challenges policymakers to look at what will soon become a hot issue — the medical use of genetic information. The genetic testing of children, now becoming prevalent in the foster care and pre-adoptive stage in order to facilitate placement and satisfy prospective parents’ “need to know,” is already …
Genetic Testing: A Cautionary Tale Of Foster And Pre-Adoptive Children, Janet Farrell Smith
Genetic Testing: A Cautionary Tale Of Foster And Pre-Adoptive Children, Janet Farrell Smith
New England Journal of Public Policy
Genetic testing of children in the foster care and pre-adoptive stage may be thought to facilitate child placement and satisfy prospective parents’ need to know. But, the policy analysis in this paper recommends great caution, especially given eugenic attitudes in the history of adoption and the risk of creating a second tier of un-adoptable children. Testing should be done only when two conditions are satisfied: test information is medically useful for childhood onset diseases; test information supports and does not diminish the child’s access to present and future healthcare (or the child’s future insurability). Public policy needs to make a …
Regulation Of Research With Children: The Evolution From Exclusion To Inclusion, Duane Alexander
Regulation Of Research With Children: The Evolution From Exclusion To Inclusion, Duane Alexander
Journal of Health Care Law and Policy
No abstract provided.
(Women And) Children First: Applicable To Lifeboats? Applicable To Human Experimentation?, Lainie Friedman Ross, M. Justin Coffey
(Women And) Children First: Applicable To Lifeboats? Applicable To Human Experimentation?, Lainie Friedman Ross, M. Justin Coffey
Journal of Health Care Law and Policy
No abstract provided.
The Lead-Based Paint Abatement Repair & Maintenance Study In Baltimore: Historic Framework And Study Design, Joanne Pollak
The Lead-Based Paint Abatement Repair & Maintenance Study In Baltimore: Historic Framework And Study Design, Joanne Pollak
Journal of Health Care Law and Policy
No abstract provided.
Parental Consent For Children's Participation In Biomedical Research: The Ethical, Regulatory, And Judicial Framework Of Grimes V. Kennedy Krieger Institute, Inc., Karen Smith Thiel
Parental Consent For Children's Participation In Biomedical Research: The Ethical, Regulatory, And Judicial Framework Of Grimes V. Kennedy Krieger Institute, Inc., Karen Smith Thiel
Journal of Health Care Law and Policy
No abstract provided.
The Kennedy Krieger Case: Judicial Anger And The Research Enterprise, Jack Schwartz
The Kennedy Krieger Case: Judicial Anger And The Research Enterprise, Jack Schwartz
Journal of Health Care Law and Policy
No abstract provided.
Reconstruing Genetic Research As Research, M. Therese Lysaught
Reconstruing Genetic Research As Research, M. Therese Lysaught
M. Therese Lysaught
No abstract provided.