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Topic: Patient Autonomy
March 2, 2012 | Posted By Posted By David Lemberg, M.S., D.C.
Dr. Ricki Lewis The Forever Fix
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Dr. Ricki Lewis is a science writer with a Ph.D. in genetics. Her newest book, The Forever Fix: Gene Therapy and the Boy Who Saved It, a narrative nonfiction book from St. Martin’s Press, is arriving in stores on March 13.

In our wide-ranging interview, Dr. Lewis discusses

  • How gene therapy can extend a child’s life, in some cases by years
  • Issues encountered in deciding whether a child should enroll in a gene therapy trial
  • How participants should be chosen for clinical trials
  • How problems with the informed consent process initially derailed gene therapy
  • "Therapeutic misconception"
  • How gene therapy may benefit patients with Parkinson's disease and macular degeneration

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

December 15, 2011 | Posted By Lisa Campo-Engelstein, PhD

In August of this year, the Department of Health and Human Services announced that, as part of its preventive health initiative under the Patient Protection and Affordable Care Act, insurance companies would be required to provide birth control with no co-pay beginning in August of next year. This decision empowers women to have more control over their reproduction and should (hopefully) decrease the percentage of unintended pregnancies, which currently stands at a shockingly high 50 percent. Evidence shows that the medicalization of contraception—that is, positioning physicians as gatekeepers to contraception—increases cost and decreases access. In evaluating what contributes to unplanned pregnancy, 54 percent of women stated cost as an obstacle to contraception use and 66 percent claimed that an inability to obtain contraception played a role.

Today there are eleven contraceptive options for women: female condom, tubal ligation, cervical cap, diaphragm, implant, injectable, IUD, patch, pill, ring, and sponge. On the whole, female methods tend to be more expensive than male methods because most require at least one physician visit and some involve a renewable prescription. Only two of the eleven female-only contraceptives—the sponge and the female condom—do not require seeing a physician. This means that 82 percent of female methods require at least one physician visit in order to acquire the contraceptive. Moreover, 36 percent of female methods require a prescription (injectable, patch, pill, and ring), which means women must continually renew their contraceptive by going to the pharmacy or doctor. Most doctors will not continue renewing prescriptions without seeing their patients yearly, so the initial visit when the doctor prescribes the contraceptive is not enough to ensure continued access to the contraceptive.   

Due to the expense of initiating and maintaining contraception, women spend 68% more out of pocket toward their reproductive health care than men of the same age. Currently 28 states mandate insurance companies to cover contraception to the same extent as they do for other prescription medications. However, 20 of these states have provisions in place for providers, plans, or employers to deny contraceptive coverage for religious or moral reasons.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

November 7, 2011 | Posted By Ricki Lewis, PhD

Gene therapy is experiencing a renaissance, with many of the recent successes in children. For some conditions, the younger the child, the better the genetic correction, because affected tissues degenerate with time. This is the case for adrenoleukodystrophy (ALD), the “Lorenzo’s Oil” disease that strips the insulation from brain neurons. One goal of the not-for-profit Stop ALD is to team gene therapy with newborn screening, to help boys before they begin to lose abilities. 

Should gene therapy be attempted even earlier? Before birth?

Fetal gene therapy is already being done in non-human animals, presumably in preparation for phase 1 clinical trials. Gene therapy is technically more challenging than inserting a shunt to drain a hydrocephalic brain or repairing an open spine, because it entails delivering gene-carrying viruses to affected cells and not anywhere else. It is fetal medicine on a different scale. 

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

September 23, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

Dr. Michael Minor is the director of the H.O.P.E. Health Initiative for the Congress of Christian Education of the National Baptist Convention and undershepherd of the Oak Hill Baptist Church in Hernando, MS. Dr. Minor is a local, regional, and national champion of faith-based health and wellness mobilization. He is chairing the upcoming state-wide conference, Healthy Congregations Mississippi, planned for October 7-8, 2011.

In our wide-ranging interview, Dr. Minor discusses

  • How faith-based organizations are able to impact community health and wellness
  • Developing a community calendar of health observances and activities
  • Community action focusing on childhood obesity, nutrition, and diabetes
  • Creating health-and-wellness vacation Bible schools
  • New programs for sickle cell sabbaths
  • The need to focus on senior health and wellness

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

 

September 12, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

Revising the doctor-patient relationship is a very important conversation. It is worthwhile and instructive to first look at how the media — broadcast, print, and web sources — participate in and affect this relationship. Stating the obvious, there are good media and bad media. Mostly bad. The power and necessity of the 24-hour news churn forces all broadcast news stations to put out all kinds of junk. The most sensational stories attract the most eyeballs. The news cycle affects newspapers as well.

The media intentionally — or out of ignorance — distorts scientific information. Overall the media has no conception of the process of science. Media needs blacks and whites. Science and medicine are neither of these. So, probably more than 90% of the "news" people receive on medical issues is tainted, distorted, and inaccurate.

People need to participate in medical decision-making. In today’s medical environment, it is shocking and appalling how much responsibility the patient's family needs to take on in making critical decisions. What's called for ongoingly, now, is a doctor-patient partnership. But patients and their families are not well-equipped to be partners with their doctors, owing to the very poor quality of medical and scientific information they receive from their media sources.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

July 20, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

In 2008 prescription medications accounted for $291 billion in sales in the United States. In 2000, the drug industry employed more than 625 lobbyists (there are only 535 members of Congress). Big business. Big money. Big power. Power versus principles — this is an eternal dialectic. If power rules, we might as well shred the Belmont Report right now.

Universal ethical standards are meant to apply universally — not locally and selectively, at the whim of the more powerful agency. They are designed to protect the more vulnerable among us — us referring to the international community. And in an ethical world, standards of care should refer to the highest, not the lowest, common denominator.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

July 19, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

For genetic analysis related to breast cancer and Huntington's disease, it is likely such investigations are initiated for an asymptomatic patient with a relevant family history. Testing for Down's syndrome is routine for pregnant women older than 35. With the advent of maternal serum markers, aggressive obstetricians may recommend such screening to all their patients.

The right to privacy — closely related to the bioethical principle of autonomy — is the main concern in genetic testing. With whom are the results to be shared? Many ethical questions confront individuals and physicians on a daily basis. Many more will arise as technology continues to advance. The fields of bioethics and jurisprudence need to be proactive and deeply consider these matters in advance of further scientific and technological developments.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

July 11, 2011 | Posted By Ricki Lewis, PhD

”Dignity therapy" is a “novel psychotherapeutic approach” that gives patients with a 6-month life expectancy “an opportunity to reflect on things that matter most to them or that they would most want remembered.” In these days of medical experts such as Sarah Palin equating reimbursed end-of-life discussions to death panels killing granny, an outcomes evaluation of any such intervention is essential. Harvey Max Chochinov, of the University of Manitoba and colleagues in the U.S. and Australia did just that. Their impetus: “… although much progress has been made in our ability to achieve physical comfort for patients who are dying, few novel interventions have been designed to address the psychosocial, existential, and spiritual dimensions of end-of-life care.”

In an admittedly difficult-to-design study, the investigators randomized 326 patients (most of whom had cancer) to one of three interventions: dignity psychotherapy, palliative care, and client-centered care (which focuses on the “here and now” as opposed to the past and future perusal of dignity therapy). Their article in Lancet Oncology provides 9 questions that a trained dignity therapist might pose to a patient. Responses are recorded and typed up, then presented to the patient as a “generativity document.” Various before-and-after rating scales as well as patient comments revealed improvement in quality of life and family relationships with dignity therapy, although general distress was not significantly alleviated with any intervention. 

Oddly, for Dr. Chochinov is an award-winning palliative care expert, the report mentions “hospice” only as a possible physical setting! In fact, hospice volunteers have been providing dignity therapy for decades. 

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

July 1, 2011 | Posted By Posted By David Lemberg, M.S., D.C.
Jennifer Miller
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Jennifer Miller is the Executive Director of Bioethics International, the leading U.S. provider of person-centered bioethics programs for the healthcare, life sciences, and biotechnology sectors.

A physicist and bioethicist by training, Ms. Miller has wide-ranging interests in biomedical research and development, public health, and disaster preparedness ethics. Recently, the Susan G. Komen Foundation awarded her a grant for research and program development in biopharmaceutical ethics including nuanced questions surrounding informed consent, access, confidentiality, and conflict of interest. A powerful and effective speaker, she has been featured on CBS News and AP News and on the cover of Science Magazine’s Career section.

In our 6-30-2011 BIOETHICS TODAY conversation, Ms. Miller discusses

  • Bioethical issues in globalization of clinical research
  • The AZT 076 and Trovan cases
  • The ethics of placebo-based trials
  • Ethical relativism
  • The way forward — transparency, education, and oversight

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

June 25, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

Randomized clinical trials (RCT) may be the Tyrannosaurus rex of the clinical research field. Formidable, very powerful, and doomed to extinction.

The as-if-ripped-from-today's-headlines 1991 article, "Of Mice But Not Men: Problems of the Randomized Clinical Trial",1 recommends reevaluating the preeminence of this method of conducting clinical research. Insisting on RCTs represents clinging to tradition in the face of new imperatives.

Clinical research has become big business. All the parties are in bed with each other. The fact that physicians are paid per referred research subject is profoundly disturbing.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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