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August 29, 2008

President’s Council on Bioethics Meeting: Conscience and Health Professionals and Futility

September 11-12, 2008
Arlington, VA
email: diane.gianelli@bioethics.gov
Tel: 202/296-6588

End-of-Life Choices a Complicated Affair

End-of-life and other critical medical decisions that arise when patients can’t make their own choices are often complex affairs, new research shows.

They typically take into account family wishes and even physician preferences, knowledge and authority. (HealthDay)

Op-Ed: Give us say over end-of-life issues

Most of us have learned since childhood that if we work hard, good things will happen to us; if we act properly, we will be blessed with a happy and rewarding life. Even people who believe strongly in God’s will know that God can’t do it all without our help. We are largely responsible for our own successes and failures.

It is only at the end of life that this “system” fails. As we age or face a terminal illness, we wonder: What happened to our lifelong sense that we have a lot of control over our fate? (Seattle Post-Intelligencer)

Amgen Alters Anemia Drug Discounts

Amgen is halting some pricing practices that critics say were contributing to overuse of its flagship anemia drug Aranesp at a time of mounting concerns about the product’s safety.

Amgen confirmed late Wednesday that it would no longer offer rebates to oncology clinics for their use of Aranesp, although it said it would offer larger discounts at the time of purchase.

It also said it would stop offering discounts on two other drugs, Neulasta and Neupogen, based on a doctor’s purchase of Aranesp.

Critics have said that by providing hundreds of millions of dollars in discounts and rebates each year to cancer clinics, Amgen provided an incentive for doctors to use more of the drug. (New York Times)

DNA databases blocked from the public

The National Institutes of Health quietly blocked public access to databases of patient DNA profiles after learning of a study that found the genetic information may not be as anonymous as previously believed, The Times has learned.

Institute officials took the unusual step Monday and removed two databases on its public website. The databases contained the genetic information of more than 60,000 cooperating patients. Scientists began posting the information publicly eight months ago to help further medical research. (Los Angeles Times)

August 28, 2008

Op-Ed: Waiting and Worrying: Screening Tests for Down’s Syndrome Prove Stressful for a Mom-to-Be

The moment my cell phone rang, I jumped up and ran to my friends’ bathroom for privacy. It was the call I’d been awaiting, and dreading, for weeks – the one that would tell me if my unborn baby had Down syndrome. When I answered the phone, all I could do was cry. The ordeal started more than two weeks earlier when I got a call from the doctor’s office: A blood test came back positive for Down syndrome. (Victorville Daily Press)

Stephanie Brown designed for long and happy life

Every parent wants the perfect child and eight years ago Stephanie Brown was “designed” to give her the best in life.

As one of the first designer babies to be born in Sydney, Stephanie is a picture of health.

To guarantee she would not inherit the rare hereditary disorder that will kill her brother Benjamin, her parents made a decision in to try a new procedure – genetic screening.

Yesterday, as she celebrated her eighth birthday with her brother, parents Sandra and Phillip Brown, had “no regrets” at the decision they made.

“For me, if I wanted another child, there was no other choice,” Mrs Brown said.

“To bring another disabled child into the world and go through that much suffering, not just financially but emotionally, physically . . . I couldn’t do it.” (Sydney Daily Telegraph)

Can illegal drugs help depression?

Many people will enjoy some yoga or meditation this weekend. Both practices have proven health benefits, but for some people knowing that it works is never enough. They have to know why it works – what is really happening in the brain – and they will stop at nothing to find out, even if it means initiating and funding the research themselves. (Times Online)

Synthetic Blood From Stem Cells? Yes, a Company Says

Will bloodmobiles soon be a thing of the past, like vacuum-tube televisions and glass milk bottles delivered daily?

More important: Will the use of embryonic stem cells, which became a heated issue during the 2004 presidential election, finally produce a breakout product? One that will squelch the controversy for all but a few die-hards who still prefer their milk in glass bottles? (Wired)

Unfinished Race: Race, Genes, and the Future of Medicine

In the stone age of genetics, we’ve often had to settle for racial medicine, such as BiDil, the heart-disease drug marketed to blacks. But technology and economics are beginning to carry us beyond that phase. “The costs of whole-genome sequencing and whole-genome genotyping are rapidly decreasing,” Venter and his colleagues observe. “Companies such as Navigenics, 23andMe, and deCODE will genotype 600,000 to 1,000,000 markers in an effort to offer personalized genomics; several hundred dollars covers the cost of the technology.” (Slate)

Op-Ed: Genetics cannot be employment issue

If you have the breast cancer gene, is an employer justified in not promoting you to a key job out of fear that you’ll get sick? If you have diabetes, controlled by medication, should an employer be able to find that out and not hire you in assumption your health insurance costs will be high? (Chicago Tribune)

A Decline in Uninsured Is Reported for 2007

After climbing steadily for six years, the number of Americans without health insurance dropped by more than a million in 2007, to 45.7 million, the Census Bureau reported Tuesday.  The drop was the result of growth in government-sponsored health insurance programs, officials said, most of them focused on children. At the same time, the number of people covered by private insurance continued to decline. (New York Times)

Scientists Reprogram Adult Cells’ Function: Advance Stirs Up Debate on Embryos

Scientists have transformed one type of fully developed adult cell directly into another inside a living animal, a startling advance that could lead to cures for a variety of illnesses and sidestep the political and ethical quagmires associated with embryonic stem cell research. (Washington Post)

August 27, 2008

Book Review: Biomedical Ethics: A Multidisciplinary Approach to Moral Issues in Medicine and Biology

Biomedical Ethics contains more than 100 essays previously published in the journal Medical Ethics, many with commentaries and responses. Overall, the book is a satisfying read that presents many different complex ethical problems in an engaging manner. Many of the dilemmas highlight just how complicated bioethics and medical science have become in the 21st century. For example, one essay analyzes the case of a 42-year-old infertile woman who wishes to become pregnant via in vitro fertilization (IVF) using a donated egg. To maintain a genetic link to her child, she requests that her 70-year-old father be the sperm donor. (Genetically, the child would be her half brother.) (JAMA)

How do you appeal a heath claim denial?

Q: What recourse does a patient have when a health insurer or managed-care provider rejects a claim?

A: A patient’s first step should be talking to the insurer. Most have a toll-free number or help line people can use to ask questions or start an internal review of their claim. (Forbes)

Op-Ed: Cross-border reproductive care in Europe

The European Society for Human Reproduction and Embryology (ESHRE) has been concerned about the development of cross-border infertility treatment for some time. There are three reasons for this: the frequently negative publicity for infertility treatment presented as ‘reproductive tourism’, the increasing numbers and the risks for patients. (BioNews)

Doctors, family may be at odds over treatment

Some states — but not Florida — have so-called futility laws, in which providers are not required to give care which they believe is futile. (Bradenton)

Robo-skeleton lets paralysed walk

A robotic suit is helping people paralysed from the waist down do what was previously considered impossible – stand, walk and climb stairs. (BBC)

Egypt septuplets stir debate on fertility drugs

The 27-year-old woman and her husband already had three children — all girls. They badly wanted a boy, and she had not conceived in five years, so doctors gave her hormones.

The startling result was healthy septuplets — four boys and three girls — heralded by Egyptian doctors as a miracle. But debate persists about the ethics of fertility treatment in a nation where medical oversight is lax, incubators and neonatal respirators are rare, and many families face pressure to have a son. (AP)

A Stem-Cell Revolution

Scientists at Harvard University recently announced a much anticipated milestone in regenerative medicine: the creation of stem cells from patients with a variety of diseases. The cells, which can be encouraged to develop into cell types damaged by disease, such as the insulin-producing cells in diabetes or neurons in Parkinson’s, are poised to give scientists an unprecedented view of disease. (MIT Technology Review)

Insurance gap leads some elderly to forgo medicine

Many people in Medicare with diabetes, high blood pressure and other chronic conditions stop taking their medicine when faced with picking up the entire cost of their prescriptions, researchers say.

About 3.4 million older and disabled people hit a gap, known as the doughnut hole, in their Medicare drug coverage in 2007. When that happened, they had to pay the entire costs of their medicine until they spent $3,850 out of pocket. Then, insurance coverage would kick in again. (Washington Post

 

The Bioethics Poll
Should individuals and/or institutions be allowed to patent human genes?
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