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@kinmen-pasttimes
A waning gibbous moon was setting just before the sun rose near Xiban Village. The tide was low on this southeast facing beach, and the sound of the surf rhythmically beat on the shoreline. This beach is frequently my first destination on my morning cycling trip as it is relatively wide and it offers up a nice view of the rising sun.
Ancient Egypt in Six Objects
In completion of a course on ancient Egyptian history, we were required to select six object to represent periods from the historical dynasties. The assignment was minimal, requiring only a sentence or two for each object, but I decided to have some fun with it. My peers gave it top grades. If you have a sense of humor you can view the project below:
November Dusk
I was out riding and I stopped in a little village I had never visited. I found the sun setting as I stood near their reservoir. Late November 2015
I shot this using my new pocket camera - it was an experimental shot to see what I will be working with.
Morning Ride to Qiong Lin Village
August 15th - 20k Ride (Old House off Dashen Road).
This vehicle allows me to go places I would not otherwise go, take pictures I would not otherwise take, and observe beauty I would not otherwise see. I wonder what he sees?
The colorful flowers bloom brightly where, in dreamy days of long ago, my community calmly cast the seeds from dozens of different wildflowers to heal the scars of the wildfire that blew through our fragile lives on that fateful fall day.
The Antelope Valley is burning on this not yet summer day - let’s hope for a swift suppression and a full recovery.
This was exercise #1 from a MOOC in May, 2013 - Write a sentence. It could be called, “From the Year They Almost Cancelled Halloween”.
If I Ran the Zoo
When I first saw this assignment I immediately recalled the Dr Seuss story, If I Ran the Zoo, which opens with the following lines:
"It's a pretty good zoo",
Said young Gerald McGrew,
"And the fellow who runs it
Seems proud of it too."
"But if I ran the zoo,"
Said young Gerald McGrew,
"I'd make a few changes.
That's just what I'd do . . ." (Geisel, 2015)
In 1945, Tsutomu Yamaguchi was unlucky enough to not only be at Hiroshima during the atomic bombing of Japan, but three days later he was also at the site of the bombing of Nagasaki. Despite his exposure to extremely high levels of radiation from these devices, this gentleman lived a remarkable life. He passed away on January 4th, 2010 - 93 years young. (Tsutomu Yamaguchi, 2015) So how does all of this relate to this assignment?
A few years ago I had my personal genome sequenced by the popular 23andMe [https://www.23andme.com] - before the FDA intervened in that service. Direct-to-consumer (DTC) genetic testing allowed, and still allows - if you know about Promethease [https://promethease.com] -consumers to obtain the most current information as it emerges in our developing knowledge of the human genome and how that data relates to their specific circumstance. I was, and continue to be, pleased to have access to all of the information they provided, and still provide me, as I was grandfathered in to remain information accessible. But what would I do if I was "in charge of regulating how genetic testing services will be offered in a health care system or in a particular society or public health system" ?.
Regulatory oversight is, ideally, designed to protect individuals from some external danger to which individuals may not yet be aware. In the case of genomic information those dangers may include incomplete or inaccurate information regarding our present state of research and accumulated knowledge, and the potential for some individuals to respond in a dramatic manner if they perceive some detrimental information were present in their personal data. An example of a potential devastating reaction could occur if one were to discover they carried a higher than average probability for a life threatening disease, perhaps a cancer, or neurological degenerative disease. Additionally, that same information could be used to influence an individual to make some serious changes in their behavior, or seek some potential preventative procedure, such as the example of Angelina Jolie. Individual privacy, and protection from potential abuses of genomic information, remain concerns, as well.
Are direct-to-consumer products dangerous?
A little knowledge can be a dangerous thing. For this reason, if I were in charge of oversight of DTC genomic testing, I would make it my goal to insure that consumers are oriented and educated about the possible information they would receive, the limitations of our current knowledge / research, and references to support service that should be made accessible so that individuals could source reliable counseling for any concerns that may arise from the testing data. Protection of genomic data from others would be high on my list of priorities if I was in charge of oversight.
Do consumers have a right to purchase their genomic information from a DTC company?
Yes, I think so. In the future, I imagine genomic testing will become as common as dental x-rays - a skilled professional will want all the available detailed information before making a proper educated assessment and moving forward with an action plan devised to increase the quality of life for that individual.
Should such services be authorized for reimbursement by the health care system?
Yes. Again, I think, just as dental x-rays are covered by dental insurance plans, genomic testing should be a common, if not preferential, method in assessing a person's health care options.
Will such screening programs improve public health?
By acquiring larger amounts of data, from diverse population, we have the possibility to increase our overall understanding of us - Homo sapiens. In that manner, common use of genomic screening will, I believe, improve public health both individually and globally.
Finally, as humans travel farther from Earth, exploring Mars or a moon of a more distant planet, and later perhaps beyond the bounds of our solar system, environmental conditions could expose us to conditions more extreme than we find anywhere here on Earth. Perhaps, stored away in the genetic structure of some fortunate individual, there exists a bit of code that will help humanity adjust to those diverse conditions. How Tsutomu Yamaguchi weathered so well the conditions he was subject to is little understood, but with larger amounts of data, and much more research, perhaps the fate of humanity, as we explore ways of offering hope to future distant generations, will be assured for millions, if not billions, of years into the future.
Bibliography
Geisel, T. S. (2015). 1950 - If I Ran the Zoo - Dr. Seuss. Retrieved June 6, 2015, from Scribd.:http://www.scribd.com/doc/139350028/1950-If-I-Ran-the-Zoo-Dr-Seuss#scribd
Tsutomu Yamaguchi. (2015, May 7). Retrieved June 6, 2015, from WikiPedia: http://en.wikipedia.org/wiki/Tsutomu_Yamaguchi
Written for:
Ethical and Social Challenges of Genomic and Precision Medicine
Professors: Wylie Burke, MD, PhD, Barbara A. Koenig, PhD, Julie N. Harris-Wai, PhD., MPH - University of California, San Francisco
Week 6 - Direct-To-Consumer (DTC) Screening
By: MS (2015, June)
The benefits and risks of using whole genome sequencing (WGS) to screen infants in the population-based newborn screening program (NBS)
Certainly there will be anxiety among portions of the population if we were to implement whole genome sequencing (WGS) to screen infants in the population-based newborn screening program (NBS), just as there were anxieties about effects of the printing press, women's right to vote, TV, desegregation, video games, the internet, or legalized marijuana. Yet, given the history of eugenics and / or genocide in the history of humanity, mention of WGS will alarm, potentially, a great many peoples. In the end, I believe there is a wealth of information that all of humanity could benefit from by obtaining WGS from every individual, and I believe it is only a matter of time before that is a given for most individuals on this planet. Technological advances are rushing forward, and in this manner new technologies will come to benefit those who have been studied most.
The threat exists that WGS information could be abused, just as is / was the case of technological advances of the past, yet I imagine one day I will carry my WGS on my person in a form that could be readily accessed in an emergency to benefit my treatment should an occurrence arise.
How would you determine which types of genomic information to communicate back to families?
I think a comprehensive report of the most understood information should be passed to the families. Additionally, because we are making strides in interpreting what all the genomic data signifies, a way to access the latest information should be built into the infrastructure so the family can access the emerging science as it is discovered and validated.
Imagine that you are the director of a newborn screening program. What are the main ethical questions that should be considered before introducing WGS in the newborn screening program?
As the director I will be worried about safeguarding the individual's private information. How the information will be protected is the main ethical question that must have a resilient solution before I could heartedly accept implementing WGS in the NBS program.
What are the roles of parents and advocates in determining how and when to use WGS?
Parents should be allowed to use all the genomic information available to them based on their level of understanding, and counseling should be available to insure that adequate understanding is being presented. I imagine most, if not all, parents want what is best for their offspring, but knowing what is best is not always easily determined.
How would your answer change if we limited the use of WGS to infants who are severely ill without a clear diagnosis?
I think a lot of the anxieties, that are already occurring about infant screening, would be minimized if testing were selective. However, a lot of important data, that will lead to greater understanding of our species, would be missed if only a small percentage of the most severely ill are screened.
Written for: Ethical and Social Challenges of Genomic and Precision Medicine
Professors: Wylie Burke, MD, PhD, Barbara A. Koenig, PhD, Julie N. Harris-Wai, PhD., MPH - University of California, San Francisco
Week 4 - WGS in NBS
By: MS (2015,May)
Sunrise at NanShiHu - Red Sky at Morning. . .
5-18-2015
The Future is Developing
Don't bother knocking - it’s a private (under) development.
The eaves of a Taoist Temple - something borrowed . . .something structurally sound. Use your imagination and knowledge of religious history - understand?
Qiong Lin - I had to lay back on the steps to get this shot - If you do not seek the details, you may miss some beauty.
May 12th - Painted Wall
Fisherman’s Wash
May 7th, 2015 - Meandering
Use of Non-Directive Genetic Counseling
In these times, personal genetic information is within reach of many millions of individuals. Carrier testing / screening, prenatal testing / screening, and /or preimplantation genetic diagnosis of an embryo are available in many laboratories, clinics, hospitals, states, or countries.
Not a woman, and unable to experience pregnancy, I have, nonetheless, been instructed to speculate on how genetic information may affect the way a woman experiences her pregnancy.
I suppose I could easily make a case that I would want to know as much as possible about the health of my, as yet, unborn child - then again, that knowledge may be burdensome. For the sake of this assignment I will look at the possibility of learning that my unborn fetus has inherited the genes that lead to Huntington's Disease - a disease that usually, but not always, has an adult onset, and which causes degeneration of the brain and central nervous system, loss of memory, speech, cognitive functioning, and other devastating outcomes.
Discuss the benefits, drawbacks, and ethical challenges of non-directive counseling in your example.
Do I think reproductive counseling should always be non-directive? I do! As a woman, or a man married to an intelligent woman, I would want to be given access to the facts relating to the genetic and medical information we have learned from this screening. In the end, I need to make the best informed decision I can given my personal life situation and choices.
Should national or local government or health policy-makers play a role?
National or local government, health policy makers, and NGO's should be available to assist in the outcomes of the choices I have made, and which I must live with, regarding my developing embryo. National and local governments could have policies in place that help me make a most informed discussion - such as what services are readily available, or unavailable, regarding the continued development, and or later care, of this fetus.
Consider your own community, how does context (i.e. the healthcare system, laws, religious traditions, or cultural values) affect the practice of non-directive counseling?
I am unsure of how to address this question - for multiple reasons : I am not female, and I do not live in my native country - that outsider status could have a restricting or, conversely, freeing effect on my choice. In the community where I live I have read there are few services provided for families of handicapped children. Recently, the local newspaper reported, a man killed both his nearly adult son, and himself, stating he could no longer endure the pain and suffering both the handicapped individual and the family were experiencing (in looking for the reference to this I searched the local media and I could not find the article) - I Googled ' man kills handicapped son ' and there are, sadly, too many instances available - I imagine this much later choice must be even more difficult given the amount of energy investment which has already been made.
Finally, as a note, not all handicapped individuals are the results of known genetic transmissions - de novo mutations, and environmental factors can also cause disabilities, and those situations need consideration as well.
Written for:
Ethical and Social Challenges of Genomic and Precision Medicine
Professors: Wylie Burke, MD, PhD, Barbara A. Koenig, PhD, Julie N. Harris-Wai, PhD., MPH - University of California, San Francisco
Week 2 - Non-directive Counseling
By: MS (2015, May)