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Topic: Genetic Testing
December 20, 2013 | Posted By Benita Zahn, MS

Like everyone else, I don't want dangerous criminals roaming the streets. So on the face of things the recent US Supreme Court ruling allowing states could take DNA samples from persons accused of serious crimes without need of a warrant, sounds like a good thing. 

But, like everything in life, the devil's in the details. 

If it's okay to get that swap from a suspect's mouth for DNA when the crime is 'serious' what about when it's less serious? Who will be the judge of what constitutes a 'serious' crime? That has not been determined. 

What if the police get 'the wrong guy' .. not the guilty one. What happens to that DNA evidence and all the information contained within? 

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.

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 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.

January 7, 2013 | Posted By Ricki Lewis, PhD


In 1729, Jonathan Swift of Gulliver’s Travels fame published a satirical essay called "A Modest Proposal." He suggested that a cure for poverty was for poor people to sell their children to rich people as food.

I’m borrowing Swift’s title to bring up another outrageous idea: analyzing forensic DNA databases for a genetic signature of criminality.

Is there a genetic signature for criminality? 
It’s an old and controversial question. (NHGRI)

ADAM LANZA’S DNA

Days after the Newtown shootings of December 14, 2012, headlines trumpeted the state medical examiner’s request of University of Connecticut geneticists to examine mass murderer Adam Lanza’s DNA. What exactly that might entail wasn’t announced, but celebrity docs, geneticists, and bloggers weighed in, nearly all agreeing that (1) violent tendencies are due to complex interactions of many genetic and environmental factors and (2) probing Lanza’s DNA and finding anything even suggestive of causing his crime could lead to stigmatization of individuals who share suspect genome regions with him.

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.

December 11, 2012 | Posted By Ricki Lewis, PhD

For 15 years, the film GATTACA has been synonymous with “genetic dystopian future,” and has become a mainstay of genetics classrooms. But I’ve found a better film. It’s called, simply, Jim.

“Jim” is a terrific glimpse of a frightening future from Jeremy Morris-Burke, a self-taught filmmaker.

I never could quite connect with GATTACA, the dark tale of an assumed genetic identity in a society where the quality of one’s genome dictates everything. Perhaps it was because 1997 was the pre-genome era, when the idea of ordering a DNA test over the Internet was still science fiction. But ironically GATTACA’s “not-too-distant” future, in which a genetically inferior “invalid” impersonates a “valid” to achieve a dream, sets up a too-obvious conflict, with the details and resolution contrived. I know this from years of reading fiction and watching soap operas.

Although Jim, released in late 2010, shares with GATTACA the premise of widespread genetic enhancement, it’s much more subtle and nuanced.

“Jim” is a terrific glimpse of a frightening future
from Jeremy Morris-Burke, a self-taught filmmaker.

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.

November 5, 2012 | Posted By Ricki Lewis, PhD

Famous folk have been writing about their genome sequences for a few years now. But when I received two such reports at once last week – about genetics researcher Ron Crystal, MD, and a hypothetical (I think) story about President Obama, I knew it was time to take action.

Or, in my case, inaction.

After writing ten editions of a human genetics textbook and lots of articles, you’d think I’d be first in line to get my genome sequenced. But I prefer ignorance.

The quest to know ourselves by our DNA sequences began in the late 1980s, with the conception of the human genome project, and reached a milestone with the actual genome sequencing.

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 24, 2012 | Posted By Ricki Lewis, PhD

When I was a fetus, I was left alone. My amniotic fluid and chorionic villi were untouched, and I arrived apparently normal, except for a mark on the part of my anatomy where a bullet “directly bit” Forrest Gump.

Perhaps that’s too much information. But TMI is precisely the problem when prenatal genetic testing detects a DNA sequence variant, but we don’t know exactly what it means. The fuzzy line between “unusual or uncertain” and “abnormal” in test results can cause great anxiety. This is especially so when “abnormal” before birth doesn’t affect health after, thanks to a characteristic of genes termed incomplete penetrance: not everyone with a genotype develops the corresponding phenotype.

A recent article in Genetics in Medicine examines the distress of a sample of women receiving “abnormal” fetal test results. Lead investigator Barbara Bernhardt, MS, a genetic counselor and co-director of the Penn Center for the Integration of Genetic Healthcare Technologies, reports that some of the participants called the test results “toxic knowledge.”

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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