Stem Cell Ethical Concerns

This particular post should be read after (at least!!) reading the previous 3 posts - Stems Cells 101, & the Potential Impact of Stem Cell Research Part1 & Part2.

I shall try to outline some of the concerns surrounding this issue. Again, this is done in a rather over-simplified manner.

Of course, I think almost everyone involved or interested in the whole debate, is hoping that the recent research where adult stem cells, or even cells harvested from the umbilical cord will prove to be a successful route in the future. This technique should remove many (but not quite all) of the concerns that people have on the issue. I promise you that no scientist is choosing to research this area because of the ethical issues, or merely to make use of spare blatocysts that there may be in his lab. Every researcher I have met in this field is fully aware of the sensitive nature of the research. Certainly none of them are the evil mad scientists, that some sections of the popular media try to portray them as! (Well OK, I cannot comment on some of the North Korean labs…)

The main concerns are:

• Human embryonic stem cell research involves the destruction of a blatocyst, which some people regard as a human life.
• Some people have an issue with creating a blatocyst with the sole intention of destroying it.
• A concern is that this research could lead to the exploitation of women, as more and more donor oocytes may be needed.
• Some people object to the mixing of human and non-human genetic material in the research.
• Some sections of society even have objections to any advances in not only stem cell research, but genetics, molecular biology, and many other similar medical interventions are manipulations which undermine human dignity.
• There are other concerns, certainly but I hope this touches on the main ones.

Any research on human embryos is going to raise profound questions about the status of the human embryo, the extent to which it is justifiable to use human embryos to expand knowledge and ameliorate human suffering, and the conditions under which these goals may be pursued. Many people hold the view that a human embryo (of any stage) is morally equivalent to a human life. Some claim that any manipulation of a human embryo undermines human dignity. These are philosophical views which should not just be ignored. However, these philosophical views do not always manifest themselves culturally in our societies. A natural miscarriage (which, I have had the misfortune to witness) is a harrowing experience, but we do not conduct a funeral afterwards. Similarly, for most couples, the excess blatocysts from IVF treatments can be disposed of without any need for ceremony or specific interventions that we may feel appropriate for, say, the death of a child. Many religions do not recognise the human embryo as human life until a specific stage (around 40 days after conception).

I do feel that any discussion on the ethics of stem cell research should respect these deeply held views. But I do not feel that these, alone, should bring all research in these matters to a complete halt, as the potential benefits to so many people are so huge. But I do feel that these views should assist us in developing workable ethical codes, which take into account the special status of the human embryo, and try to protect that status in a serious manner.

An excellent overview can be read at

http://books.nap.edu/openbook.php?record_id=11278&page=47

Potential Impact of Stem Cell Research (Part 2)

Right, so we have covered what stem cells basically are (Stem Cells 101), and I touched on their potential impact in the next post Potential Impact of Stem Cell Research Part 1. Now let's look at the more controversial issues of cloning. I think this is the area which is most misunderstood, and seems to cause most problems for many people.

There are two distinct subjects to cover:
a. Therapeutic Cloning.
b. Reproductive Cloning.

Therapeutic Cloning
This is where cloned tissue is used to "grow" replacement organs for people who have sustained damage to their organs (through disease, or injury, for example). It so happens that this month (August) is organ donors month. I would encourage everyone to consider signing up for organ donation. Discuss it with your family, as obviously your decision will effect them. But organ transplants are becoming more commonplace (as we know, the first heart transplant was performed in SA). Transplants are held back for 2 main reasons; the availability of organs, and also the fact that the human body tries to reject foreign tissue. To get around the second problem, the recipient has to be pumped full of very strong anti-rejection drugs (which also leaves the person with vastly weakened immune systems). This can often lead to complications, other infections and death. Our knowledge is increasing in this though. The concept of therapeutic cloning is to use (ideally stem cells derived from that person, from potentially umbilical cord cells, or from adult stem cells) tissue that has been grown from stem cells that have had the recipients own DNA introduced into them (by the use of Somatic Cell Nuclear Transfer - SCNT). This would negate the rejection problem. Recently, in Imperial College London, a heart valve was produced and transplanted into a patient. Because stem cells have the ability to grow into any cell, then it is hoped that almost any tissue or organ could be produced in this manner. The potential of this is huge, and could dramatically improve the survivability of people who are severely injured in car accidents, properly functioning pancreases may be grown for people with diabetes, brain tissue producing the right amount of dopamine for people with Parkinson's Disease, new kidneys for people in renal failure, eye tissue & retinas for people with different conditions causing blindness such as RP, the list is very long… Of course we have a long way to go, and it may well be that we have some more huge hurdles to overcome. The mass media has overplayed the timings (and ease) of this science. It is hugely complex, and the likely benefits are still some time away.

Reproductive Cloning
Reproductive cloning is where a completely genetically identical embryo is produced. Think Dolly the sheep (whose stuffed body can be viewed in the Museum of Scotland), or Booger the pitbull. Again, I feel that the mass media are at fault in badly reporting the issues around reproductive cloning, with visions of armies of identical Aryan peoples. The media has also falsely reported that human cloning has already happened in some countries, but a more detailed look at the evidence would suggest that this is very unlikely. Reproductive cloning is also fraught with complex problems (aside from the ethical considerations). There is also a complete misunderstanding about what a clone is. A clone is a genetically identical twin. But this would not mean that the clone would think exactly alike to the donor. But, as we know in the nature / nurture observations, genes are only part of the make up of any characteristics. Identical twins, that have been separated at birth, while still displaying obvious visual similarities, can often grow up to have completely different characters, molded by the environments in which they grew up in. Dolly would not have had the same thought processes as her donor animal. Very few people see any benefit of producing human (or indeed any animal) clones, as there is no increase in the genetic profile. There is the theoretical possibility of producing a reproductive clone with the sole purpose of harvesting donor organs, but there are obvious moral & ethical issues to this. But nevertheless, it is important that any discussion on ethics and morals around this subject must also consider this possibility.

Potential Impact of Stem Cell Research (Part 1)

Stem Cells 101 gave a very brief, simple look at stem cells. Now we will look at the possible areas in which they may be used. I really want to unpack this before touching on the ethical issues. In this post I am concentrating on impairments and diseases. Part 2 will look at the potentially more contentious issue of cloning.

It is important to realise that while there are applications were adult stems cells are being used in medical procedures to good effect (in particular bone marrow transplants to treat Leukemia, and one of my friends is alive today because of that particular procedure!), presently there are no medical procedures being used based on Embryonic stem cells. So is all this noise a waste of time? Well, no. Research is still in the early stages. Indeed the first time that human stem cells were first derived was only in 1998. In the 10 years since then a lot has been found out, but this has also been hampered by restrictions, many political in nature. Certainly no one is doubting that this is a complex part of medical science. The mass media has not helped, by some of the very poor reporting, and exaggerated claims that they have fed the general public. Even if this research will produce cures & applications (which I am confident they eventually will), these are not "just around the corner", as has been reported in many instances in the previous decade. The reality is that I shall keep my wheelchair for the time being, and my father is probably too old for him to receive any cure for his Parkinson's Disease in time.

But the potential of stem cell research is enormous. Not only for the number of diverse conditions that may finally have a cure (or even a prevention), but also because of the nature of many of those diseases. Medicine has made some amazing advantages over the last century, and probably each of either would be, or have a close family member who would have died, if it were not for some medical intervention or other. Certainly 75% of my immediate family would be dead, including me. But there are still many really serious conditions and impairments that we just have no answers for yet. Many of these have a profound effect on peoples' lives. The possible diseases and impairments that stem cell research has the potential to effect includes (this list is not meant to be exhaustive!):

• Neurological
• Parkinson's Disease (think Michael J Fox, Muhammad Ali)
• Spinal cord injuries (Think Superman…and...dissol!!?)
• Retinal disorders (Stevie Wonder)
• Multiple Sclerosis (up to 150 out of every 100,000 of the population)
• Alzheimer's Disease (26.6million people worldwide think Ronald Reagan, Terry Pratchett), although it has to be said that some recent research in this particular field is painting a less promising picture than we had thought...
• Motor Neurone Disease (Prof Stephen Hawking, David Niven)
• Muscular Dystrophy
• Huntington's Disease
• Spinal Muscular Atrophy

• Others (Blood & Pancreas mostly)
• Leukemia (2% of all cancers)
• Sickle-cell Anemia (especially important to us in sub-Saharan Africa)
• Immunodeficiency (including HIV & AIDS)
• Lymphomas (5% of all cancers)
• Lupus (Michael Jackson, Elaine Paige Seal)
• Arthritis (Nelson Mandela)
• Bone Marrow Failure
• Diabetes (171million people or 2.8% of the global population, and rising, rapidly)

Of course, I am not claiming for a moment, that stem cell research will find absolute cures for the above, or any of the above. That is a common mistake made by the mass media. It may be, that some of the hurdles that researchers are finding out about, that they are insurmountable. But the research is looking very exciting in many of these different areas. I doubt we shall see any cures in widespread use soon. The best estimates seem to be looking 3 - 10 years ahead. That is also sometimes used as a argument against stem cell research; they ask "where are the cures?" This is not unreasonable, but the reality is that we do have some (small) cures and advances already, but also that this whole area of research is very complex, and by the nature of the research much of it is slow moving. Remember human stem cells were only first isolated in 1998…a mere 10 years.

Next post will be looking at the more contentious (and I would suggest less well understood) issues of cloning, both therapeutic and reproductive cloning. Only then, once we can agree some baselines, should we begin to think about some of the ethical issues around this research.

Accessibility

Is your house accessible? Probably not. A recent survey in the UK found that 98% of all new, privately built dwellings are inaccessible (to wheelchair users). My anecdotal (therefore untrustworthy) experience, would suggest that that figure would be similar here in SA. What about your place of work? Or you local restaurant / café? What about your place of worship? Cinema? Doctor's surgery? Post Office?

So let's assume that your house is inaccessible. So what? No one in your house is disabled, and you certainly would not entertain the idea of inviting me around!!! Why go to the expense of making it accessible when it will never have a use?

Great question. Well, here comes the answer. A recent piece of research in the US (yes, I know all these are overseas figures, and things are different here…but please bear with me), has some fascinating findings. They predict that by 2050 (due to aging populations etc.) that 21% of all households will have at least one resident with a “long-lasting, severe mobility impairment” . Therefore (as people move houses) there is a 60% chance that any house will have to accommodate a long term disabled occupant, during the lifetime of the dwelling. However the figures are even more compelling when both short term impairments (such as injuries) & visitors are taken into account - they estimate that the figure rises to 93%.

The interesting point is that the trend towards accessible housing (so called lifetime housing) is being driven by the insurance industry in terms of cost saving. It is much more cost effective to design a house from the outset, to be accessible, rather than have to bolt on later. The sort of figures that are generally accepted is that to design any facility to be fully accessible from the outset adds 0.2% to the capital costs. Later adaptations can be as high as 10%.

It is not expected that every part of every house would be fully accessible (although that would be nice!), rather there are 3 main issues:

1. At least one level entrance into the dwelling (can be front, back or side).
2. All doors on the main floor, all doorways wide enough (>800mm) for easy access.
3. At least an accessible half (but preferably full) bathroom accessible on the main floor.

The bottom line, is that it makes financial sense to design, and build our houses (and all other built environments, by extension) to be fully accessible to all. Any of us may benefit from this accessibility one day…indeed, one could suggest that we all hope that we live long enough that we will benefit.

The research paper can be read here.

Case study: Brighton & Hove City Council - Talking Bus Stops for the blind and visually impaired (linked to Real Time Bus Information signs) :: Public

This is a very interesting piece of news. A city in the UK has won a technology award for the provision of talking bus stops. I would suggest that people read the full article. They do say that this can be replicated in other areas, and I hope that will happen.

Case study: Brighton & Hove City Council - Talking Bus Stops for the blind and visually impaired (linked to Real Time Bus Information signs) :: PublicTechnology.net :: e-Government & public sector IT news job vacancies:: "A multi-disciplinary working group was been formed, including councillors, officers, system designers, users, local politicians and consultants. A partnership was formed with the Royal National Institute for Blind (RNIB) to evolve a RNIB React system from providing orientation messages to include Real Time Information. The interface to provide a text to speech link with the Siemens VDO Passenger Information Displays was created by working with SFX Technologies, whilst Atkins Consultants helped with project management. The resulting system can be replicated in other areas and interest has already been shown from London local authorities."

Double amputee walks again due to Bluetooth - CNN.com

This is very exciting! It just shows how new technology is breaking new ground every day.

Double amputee walks again due to Bluetooth - CNN.com: "WASHINGTON (CNN) -- Marine Lance Cpl. Joshua Bleill lost both his legs above the knees when a bomb exploded under his Humvee while on patrol in Iraq on October 15, 2006. He has 32 pins in his hip and a 6-inch screw holding his pelvis together.

Joshua Bleill, pictured here with his girlfriend, is walking again with the aid of prosthetics outfitted with Bluetooth.

Now, he's starting to walk again with the help of prosthetic legs outfitted with Bluetooth technology more commonly associated with hands-free cell phones."

Rolling Rains Report:: Steak & Shake: Where ADA Compliance has Been Taken Off the Menu!

This should make all businesses and restaurants think...

Rolling Rains Report:: Steak & Shake: Where ADA Compliance has Been Taken Off the Menu!: "Americans with disabilities spend more than $13.6 billion annually on travel. The Open Doors Organization calculated that in 2003, persons with disabilities or reduced mobility spent 35 billion dollars in restaurants. According to the same study, more than 75% of these people eat out at restaurants at least once a week."

BBC NEWS | Health | Stems cells 'slow nerve disease'

More interesting news on Stem Cell research, but the scientists rightly warn that the clinical use is still a long way off.

BBC NEWS | Health | Stems cells 'slow nerve disease': "Stems cells 'slow nerve disease'
Stem cells show potential for treating the debilitating nerve condition motor neurone disease, research suggests. A US team found injecting rats with stem cells delayed the onset of MND. Writing in the Transplantation, the researchers from Johns Hopkins Medical Institutions warned clinical use of stem cells was still a long way off."

BBC NEWS | Health | Find 'offers motor neurone hope'

This could be an exciting breakthrough, although there obviously needs to be a lot more work done on this.

BBC NEWS | Health | Find 'offers motor neurone hope': "Find 'offers motor neurone hope'
Scientists are hopeful that they have found a way to halt the progression of motor neurone disease (MND). A team at Bath University discovered a causal link between the gene involved in the formation of blood vessels and the development of some forms of MND. Mutant versions of the gene's product - angiogenin - are toxic to motor neurones, so blocking this process may stop the disease, they say."

Trekker - HumanWare assistive technologies for vision

Trekker - HumanWare assistive technologies for vision: "A GPS system for the Blind and visually impaired A revolutionary system that uses GPS and digital maps to help blind persons find their way in urban and rural areas. Trekker users can pinpoint exactly where they are, learn about area attractions, and find out how to get to specific destinations. GPS lets them know their location, anywhere in the world, with continually growing precision. Fitting in the palm of the hand, Trekker offers the visually impaired greater freedom, raising their confidence in their ability to travel near or far, for business or pleasure. It also helps them access and enjoy the most valuable and interesting opportunities their surroundings have to offer."

BBC NEWS | Technology | Technique links words to signing

This is fascinating!

BBC NEWS | Technology | Technique links words to signing: "Technique links words to signing By Geoff Adams-Spink Age & disability correspondent, BBC News website Photo of the signing avatar The avatar was developed by the University of East Anglia Technology that translates spoken or written words into British Sign Language (BSL) has been developed by researchers at IBM. The system, called SiSi (Say It Sign It) was created by a group of students in the UK. SiSi will enable deaf people to have simultaneous sign language interpretations of meetings and presentations. It uses speech recognition to animate a digital character or avatar. IBM says its technology will allow for interpretation in situations where a human interpreter is not available. It could also be used to provide automatic signing for television, radio and telephone calls."

Rolling Rains Report:: US Census Reports Releases Statistics on Disability

Hmm... whenever I look at these sort of figures, I wonder how South African politicians really believe that the prevalence of Disability is a fraction of these figures in South Africa?

Rolling Rains Report:: US Census Reports Releases Statistics on Disability: "US Census Reports Releases Statistics on Disability

U.S. Census Bureau releases disability statistics

The Census Bureau recently released a Fact Sheet on Disabilities
in preparation for the 17th Anniversary of the Americans with
Disabilities Act. Updated numbers show the following:

* 51.2 million people have some level of disability
(18 % of population).

* 32.5 million have a severe disability (12% of whole population).

* 4 million children have a disability (or 11% of children
ages 6 to 14)

To view the entire fact sheet, go to:
http://www.census.gov/Press-Release/www/releases/archives/
facts_for_features_special_editions/010102.html"

Labour on defective lifts and buildings in Durban

When one realizes that a defective lift can be a complete barrier to access for many people with disabilities, or worse, if they are defective then potentially they could strand people on upper floors, with no means of escape; then we should be absolutely horrified at this finding. It is essential that action is taken by the authorities to address this serious, dangerous problem. this work was done in Durban, but I am sure other cities in South Africa would be no better. I will follow this with great interest.

Labour on defective lifts and buildings in Durban: "24 April 2007

A random survey of buildings in parts of Durban's inner city and surrounding suburbs shows that 67% have lifts that are defective or not functioning.

The findings of the study also show that a total of 33 buildings out of 49 have lifts that are not functioning or defective. Sixty seven percent of the buildings' lifts have broken down completely, stalled frequently or are defective.

Fifty three percent of the lifts were not functioning at all from less than a year to 20 years. Approximately 20% have not worked for a period of between four to five years, and 8% between 10 to 11 years with complaints by residents disregarded by the owners or bodies corporate."

BBC NEWS | Health | Research opens way for bionic eye

A long way off yet, but fascinating nontheless:

BBC NEWS | Health | Research opens way for bionic eye: "Research opens way for bionic eye
Eye
A bionic eye could potentially restore sight
US scientists have opened the way for the development of a 'bionic eye'.

They used electrodes to stimulate an area of the brain that processes visual information, the Proceedings of the National Academy of Sciences reported."