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Topic: Genetics
August 27, 2014 | Posted By Ricki Lewis, PhD

Eman’s emails arrive hours ahead of the news here. He wrote on Sunday, August 17:

“An Ebola quarantine site was attacked and looted. News is that most of the patients have escaped. This is going to put more fear into the population. All this because people are denying the virus.  More people might get exposed.  I’m so weak I can’t wake up this morning. Its 6:00 pm and I am still in bed listening to the news.  All this happened in a very populated area called West Point. Got pain all over my body. Keep me in your meditations.”

Emmanuel is a medical student in Liberia whom my husband and I have been supporting since he contacted me after reading my human genetics textbook in 2007. Until the fever hit him last weekend, he dedicated himself to “sensitization,” educating the public about how to stay safe. But now he’s too sick and weak to venture out.

His email from Monday, August 18, said only “Need help!”

Ricki Lewis is the author of "The Forever Fix: Gene Therapy and the Boy Who Saved It," St. Martin's Press, March 2012.  To read more blogs from the author, please visit her site at http://www.rickilewis.com.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

October 21, 2013 | Posted By Paul Burcher, MD, PhD

The lay press has reported on two stories this week that both relate to “designing babies,” although only one of these reports is about producing “designer babies.”   The two new technologies, neither yet utilized in a human population, raise different ethical questions, but I, for one, am more troubled by the prospect of a “designer baby” than I am by the possibility of designing, or creating an embryo, free of its mother’s mitochondrial disease.

National Public Radio (NPR) reported on the advances in treating mitochondrial disease with its story that embryologists are now capable of creating an embryo with maternal DNA but with another woman’s mitochondria, thus allowing women with serious mitochondrial diseases to have healthy offspring.  The ethical issues are twofold.  This would be the first time we would change the genetics of an embryo, and this change could be passed on to its offspring as well (but only to female offspring because mitochondria are passed along the maternal line by way of the mitochondria in the ovum).  Some ethicists have argued that manipulating the genetics of the human genome in a transmissible way is a “bright line” that should not be crossed because if the procedure created any new genetic mistakes, these too would be heritable.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

October 7, 2013 | Posted By Ricki Lewis, PhD

On September 24, the direct-to-consumer genetic testing company 23 and Me was granted patent no. 8543339, covering the selection of traits in offspring by genotyping eggs and sperm. (“Gamete donor selection based on genetic calculations.”) An analysis of the ethical issues the patent raises is published today in Genetics in Medicine. (Coincidentally, a co-author of the paper was so critical of a recent DNA Science blog post that comments had to be cut off. Small world.)

I’d started thinking about today’s post a few weeks ago, when a prominent science writer posted on a listserv “What was the CEO of AAAS thinking?” and then quoted Alan I. Leshner telling the New York Times: “K-12 students need to know the nature of science, how scientists work and the domains and limits of science. Science can’t tell you about God. Or when life begins.”

“Um…when life begins is a pretty basic idea in biology,” commented the originator of the compelling listserv thread that followed. Actually, no.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

August 15, 2013 | Posted By Posted By Hayley Dittus-Doria

Twenty-three years ago, Arizona State University geneticist Teri Markow collected samples of blood from the Havasupai Indians, who live in a remote corner of the Grand Canyon. She was looking for genetic markers of diabetes, but instead, used the DNA in the blood to study schizophrenia — or so the story goes.

In 2003, the Havasupai sued ASU and Dr. Markow.

But it never happened. Dr. Markow never probed the DNA for anything other than standard, generic markers. So how did she wind up the tarnished target of a classic case study in bioethics?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

August 13, 2013 | Posted By Jane Jankowski, LMSW, MS

This past week brought the announcement of an agreement between the living relatives of Henrietta Lacks and the U.S. National Institute of Health (NIH) regarding use of genetic information derived from HeLa cells, NY Times. Henrietta Lacks was a patient at Johns Hopkins Hospital in Baltimore, Maryland in 1951 where she was treated for and ultimately died from, cervical cancer. During her hospitalization, cells were retrieved from her tumor without her knowledge or permission. It is these cells, named HeLa cells, which proved to have an unprecedented ability to grow in laboratory cultures and were the source of many important scientific advances in the 20th centuryWall Street Journal . Neither she nor her family ever received any financial compensation for the vast contribution HeLa cells have made to science and society and restitution is not part of the story this week. Privacy of genetic information derived from Henrietta’s cells is the family’s concern, and rightly so. Of note, the story of Henrietta Lacks, her family, and HeLa cells is now widely known with the publication of Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks” in 2010 – a recommended read for anyone regardless of prior interest or knowledge in biomedical ethics www.rebeccaskloot.com

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

June 13, 2013 | Posted By Ricki Lewis, PhD

Earlier today, my “in” box began to fill with info from everyone I’ve ever met letting me know that the Supreme Court had ruled on the Myriad case about patenting the breast cancer genes BRCA1 and BRCA2. I also received a dozen pitches from PR people offering me all manner of instant interviews with lawyers, doctors, bioethicists, and health care analysts.

No one offered me an interview with a geneticist – a person who knows something about DNA. So being such a person myself, I decided to take a look at the decision. And I found errors – starting right smack in the opening paragraph.

“Scientists can extract DNA from cells to isolate specific segments for study. They can also synthetically create exons-only strands of nucleotides known as composite DNA (cDNA). cDNA contains only the exons that occur in DNA, omitting the intervening exons.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

June 10, 2013 | Posted By Jane Jankowski, LMSW, MS

In a recent CNN article, it was reported that American women are requesting double mastectomies at vastly increased rates – up 150% among women with early stage breast cancer according to one 2007 study. With Angelina Jolie’s New York Times Op Ed piece hitting newsstands on May 14, 2013 the spotlight that has shown on breast cancer and its ancillary campaigns shines bright once again. There can be no doubt that breast cancer awareness, research, and treatment have become recognized beneficiaries of phenomenally successful fundraising campaigns. Yet, if we peel away the pink stickers, pins and flags, do we find empowerment of women or pressure to take action out of fear? To that end, what are the obligations of providers when faced with patients who demand mastectomies where there is no disease and no elevated risk?

In general, a patient’s demand for removing healthy body parts is considered ethically problematic. Is an orthopedic surgeon obligated to amputate a foot because it may someday be broken? This type of request would be declined on the grounds that the risks of surgery and ensuing debility are not worth the benefit of an unconfirmed and unlikely harm. Does our discomfort lessen if it is the amputation of a foot belonging to a diabetic patient out of fear it may someday loose circulation, become infected or gangrenous, and need amputation down the road anyway? The potential for complications related to diabetes may be genuine, but far from certain. Surveillance, lifestyle choices, and early intervention can mitigate the need for such a surgery and would be considered the standard of care for a concerned patient. For patients with BRCA mutations, prophylactic surgery and chemoprevention are added to the list of options. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

May 17, 2013 | Posted By Ricki Lewis, PhD

Today is both DNA Day and World Malaria Day. As I was pondering how to connect the topics, e-mail arrived from my “son,” a medical student in Liberia. He had malaria, again, and this time it had gone to his brain.

I “met” Emmanuel in 2007, when he e-mailed me after finding my contact info at the end of my human genetics textbook, which he was using in his senior year of high school. He is my personal link between DNA Day and World Malaria Day. But the dual commemoration also reminds me of the classic study that revealed, for the first time, how hidden genes can protect us – that carriers of sickle cell disease do not get severe malaria.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 25, 2013 | Posted By Zubin Master, PhD

Several scholars claim that hyping different biotechnologies will lead to a loss of public trust which in turn will result in a loss of support for science. This has been discussed in the context of genomics research, gene therapy, stem cell research, biobanking, neuroimaging research, and nanotechnology. The problem most articulate is that hype in terms of promising medical benefits to the public will generate an expectation by the public and when such expectations are unmet, the public’s support for science will wane. Certainly there is social science evidence to support that (a) hype over many biotechnologies is present in the popular media and (b) several actors are involved in hyping science including scientists, media, politicians, and others. And while the idea that hype and unmet expectations could result in a loss of public trust and support for science seems logical and to some degree intuitive, I think the reality is that the relationship between hype, public trust, and the loss of support for science is quite complex. It is also complicated to measure empirically and to date, there is no study I have come across that demonstrates this relationship. In fact, the one study evaluating the public and donor’s perceptions on hype and stem cell research actually shows that people “aren’t taken in by media hype.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 18, 2013 | Posted By Ricki Lewis, PhD

You have your genome or exome (the protein-encoding part) sequenced to help diagnose a puzzling set of symptoms, and something totally unrelated, and unexpected, turns up – a so-called “incidental finding.”

Surprises, of course, aren’t new in medicine. The term “incidental finding” comes from “incidentaloma,” coined in 1995 to describe an adrenal tumor found on a scan looking for something else. I had one — a CT scan of my appendix revealed a polycystic liver. A friend had it much worse. She volunteered to be a control in an Alzheimer’s imaging trial, and her scan revealed two brain aneurysms!

Geneticists have long expected an avalanche of incidental findings from clinical (exome or genome) sequencing. Researchers from Baylor College of Medicine and NHGRI and elsewhere described several cases at the American Society of Human Genetics annual meeting last fall. My favorites:

- A boy had his genome sequenced as part of a project to better diagnose syndromes of developmental delay, intellectual disability, and seizures. Researchers found the aorta weakening of Marfan syndrome, gave the boy a repurposed drug in clinical trials, and he’s ok.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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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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