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The Debate Over Stem Cell Research
Created by:
Kirk Einspahr
Jodie Huenefeld
Dianne Massey
Megan Vogel
Stem Cells
Unit overview
This unit is designed as introduction to ethical decision making, to follow a unit on
cell biology. After completing this unit students will understand what stem cells
are, why they are controversial, and they will use an ethical decision making
framework to make well-reasoned decisions regarding one of several scenarios.
In addition, student will understand the different types of cloning and the ethical
issues regarding them.
Designed for: High school biology
Time required: 4 – 6 class periods
Benchmarks: 2.2 Apply science knowledge and skills to solve problems
3.1 Understand the nature of scientific inquiry
3.2 Know that science and technology are human
endeavors, interrelated to each other and society.
Unit outline
I. Introduction to ethical decision making framework
a. Sample scenarios
b. Discussion of ethics
c. Practice using the framework
d. Final scenario
II. Stem cell research
a. Internet research on stem cells
b. Opinion survey
c. Stem cell news article
III. Stem cell case studies
IV. Cloning
a. Introduction to different types of cloning
b. Cloning panel discussion
c. Assessment
d. Resource list
Lesson 1
Introduction to ethical decision making framework
Objective: Students will be able to make rational decisions based on universal
ethical principles using a decision making framework.
1. Introductory ethical dilemmas 5-10 minutes
a. Each student receives a copy of two ethical dilemmas (bus and
nurse) and individually decides what the ‗right‘ thing to do in each
case is.
2. Introducing an ethical decision making framework 20 minutes
a. Volunteers share what they decided for each case and why.
b. Brainstorm values used to make these decisions. Students should
come up with values that correspond to four universal ethical
principles.
c. Introduce the ethical principles of autonomy, non-maleficence,
beneficence, and justice. Students may complete Universal Ethical
Principles table as you complete on overhead. Discuss definitions
and examples of each principle.
3. Using the ethical decision making framework – whole class 15 minutes
a. Using an overhead transparency, work through the ethical decision
making framework as a whole class using the issue: Should the
wealthier members of society be forced to pay through taxation for
the poor members? If so, how much?
4. Using the ethical decision making framework – pairs, small groups or
homework
a. Students receive a final scenario (man in southern town) and a
copy of the ethical decision making framework. Complete the
framework and make a decision based on ethical principles.
Underlined items refer to those materials included in this unit plan.
Lesson 2
Background research on stem cells using the internet
Objective: Students will understand what a stem cell is, current and possible
stem cell therapies, and form an opinion about the ethical issues of
stem cell research.
1. Internet research at Genetic Science Learning Center website.
a. Each student receives a copy of Stem Cell Research questions.
b. Students log onto website: http://gslc.genetics.utah.edu
c. Use information on the website to answer the questions
2. Opinion survey
a. Print out the Opinion Form: What do you think about stem cell
research? from GSLC website:
http://gslc.genetics.utah.edu/units/stemcells/scpoll/ for the students
to complete.
3. Homework
a. Read Time magazine article ―The Great Debate Over Stem Cell
Research.‖
b. Complete article questions.
4. Optional: Have students visit the following website to see an animation of
procedure for stem cell production:
http://www.pbs.org/newshour/health/stem_cell_animation.html
Underlined items refer to those materials included in this unit plan.
Lesson 3
Examining stem cell case studies
Objective: Students will make rational, well-reasoned decisions regarding
ethical dilemmas involving stem cells.
1. Case study options
a. Parkinson‘s Disease (includes questions)
b. Mutantville, USA (using ethical decision making framework)
c. Embryo‘s-R-Us (includes questions)
d. Fetal Flaw (using ethical decision making framework)
i. original article included with this unit
Ethical decision making framework may be used for all case studies.
Questions for two case studies are included as an option. Students may
work in small groups, pairs, or individually. Can be assigned as
homework.
STEM CELLS
ASSESSMENT OPTIONS A-F
A. POSTER PRESENTATION
Design a poster devoted to the student‘s research or ethical decision-making
framework process (case studies), and present their findings in poster-form.
Posters could include background information, and the parts of the framework for
ethical decision making, including their decision, and justification for the decision
they made.
B. FRONT-PAGE NEWSPAPER
Design the front page of a ―special edition‖ of a newspaper devoted to the
student‘s research or ethical decision-making framework process.
C. ―DEAR ABBY‖ TYPE ARTICLE
Propose a ―question‖ (with needed or appropriate background as part of the
question), and then supply a reasoned and justified answer to the ethical problem
that the question dealt with.
D. MOCK CONGRESSIONAL HEARING (from ―For the Greater
Good‖ curriculum guide)
1. Have students conduct preliminary research as homework, each bringing in an
article related to animals in research.
2. Identify key concepts that need to be clarified/explored, and additional
information required.
3. Have students identify stakeholders and values, including congressional panel
(moderate / liberal / conservative representation).
4 Randomly assign students to stakeholders.
5. Have students gather information on stakeholder perspectives, including
providing them with the ‗For the Greater Good‘ Articles as well as the Pro/Con
responses.
6. Allow each stakeholder to write their main points on an index card, and allow
them a brief time to present to the panel and answer questions from the
panel/audience.
7. After all stakeholders have spoken, the panel deliberates and shares their
decision.
8. Each individual student completes the Decision-Making Model from their OWN
PERSONAL perspective, and writes a short 1-2 page reflection paper or letter to
the editor explaining their decision.
E. LETTER TO THE EDITOR (from ―For the Greater Good‖
curriculum guide; a Letter to the Editor Scoring Guide can be found
on p.74 of that guide)
Background
A Letter to the Editor is a short essay that expresses a writer‘s views on a
topic, and tries to persuade others to accept or understand that view based on
logical arguments. It is an effective way of participating in the dialogue
surrounding an issue in the media.
Your Letter to the Editor will provide you a chance to demonstrate your
understanding of the issues surrounding the use of animals in research and allow
you to present your opinions in a well reasoned and thoughtful way. Your Letter
should build upon the conclusions you come to as a result of completing the
Ethical Decision-Making Model.
You will not be graded on what your opinion is, but rather in how well you
support your points and present your case. Your message will be influenced by
the vocabulary that you use and by the way your letter is presented, so these will
also contribute to your score. Be sure to check your final draft against the
checklist for the Letter to the Editor requirements.
Writing the Letter
1. Write a single sentence that sums up your position (sometimes called your
THESIS STATEMENT. This sentence will often contain the words should or
should not. Make the statement as specific as possible. Explain what should be
done, who should do it, and any other particulars that will clarify your position.
2. Identify the basic BIOETHICAL CONCEPTS involved and describe HOW they
relate to your position.
3. Using the information from your Ethical Decision-Making Model, develop
reasons that will support your position. How convincing your position is depends
largely on the reasons you choose to support it.
a. Your Letter to the Editor should have at least THREE reasons, each
with its own paragraph.
b. Each reason should be clearly DIFFERENT from the other.
c. Each reason should RELATE directly to the position statement.
d. Each reason should also have some EXAMPLES or EVIDENCE (facts,
statistics) behind it.
e. Your letter should include an explanation of ‗scientific models‘ and a
discussion of how they relate to your position.
4. Pick what you believe to be your opponent‘s strongest arguments and be sure
to address each of those opposing reasons with evidence. Counter them in either
a separate paragraph or as part of a preceding paragraph.
5. Conclude the letter in a way that ties things together. You may want to end
your letter with a suggestion of some kind of action that the reader should take.
6. Consult the Letter to the Editor Checklist for specific writing and presentation
requirements. In addition, consider the following:
a. Put your full name, address, phone number, and email at the top of the
letter so that the newspaper can contact you.
b. Identify by headline and date of publication any reference to a letter or
article published previously
c. Address your opponents‘ arguments instead of attacking your
opponents personally.
d. Incorporate personal experience to your letter only if it is relevant.
Letter to the Editor Checklist
IDEAS and REASONING (50 pts)
Position statement clearly stated.
Bioethical concept(s) involved clearly defined.
Relationship of bioethical concept(s) to position described.
Minimum of 3 reasons clearly stated.
Each reason is clearly different from the other.
LOGIC and ORGANIZA ORGANIZATION TION (25 pts)
Each reason relates directly to the position statement and is relevant.
Each reason has appropriate and credible examples or evidence supporting it.
Opponent‘s position analyzed and evaluated.
Effective closing statement provided.
Scientific models discussed
Voice: personal voice, aware of audience
Vocabulary: strong, natural, and avoids repetition and clichés
Overall format is similar to the following:
Position statement and description of bioethical concepts involved.
Reason 1 – Evidence/Examples
Reason 2 – Evidence/Examples
Reason 3 – Evidence/Examples
(Opponents‘ position addressed, either as separate paragraph or part of a
preceding one)
Closing and/or Call to Action
Sequence of the writing builds to a high point (has momentum)
Smooth transitions
PRESENTATION (5 pts)
Appropriate letter format: name and contact
information, date, and signature
Appropriate use of fonts (10 or 12 point, Arial, Helvetica, Times, or similar)
Standard 1 inch margins
Presentation enhances the writer‘s message.
WRITING (20 pts)
Sentence fluency: writing flows, sentence lengths are varied
Conventions: accurate spelling, grammar, and evidence of proofreading
F. REPORT—ETHICAL DECISION-MAKING MODEL SCORING
GUIDE (from ―For the Greater Good‖ curriculum guide)
Sufficient factual information gathered (10)
10 pts: Factual information gathered reflects good use of the time and resources
available to student.
8 pts: Factual information gathered reflects adequate use of the time and
resources available to student.
6 pts: Factual information gathered reflects poor use of the time and resources
available to student.
0 pts: Factual information is missing.
Additional (unknown) information necessary for decision-making identified (10)
10 pts: Additional information necessary for decision-making is thoroughly
considered, clear explanation of what is lacking is provided.
8 pts: Additional information briefly considered, and explanation conveys what is
lacking
overall.
6 pts: An attempt to identify additional information is made, but explanation is
unclear or not present.
0 pts: Additional information not considered.
Stakeholders clearly identified (5)
5 pts: Major stakeholders clearly identified, and their claims, values, and
assumptions are explored.
4 pts: Major stakeholders clearly identified, but without corresponding clarification
of their position.
3 pts: Major stakeholders not clearly identified, or irrelevant stakeholders
mentioned.
0 pts: Description of stakeholders is missing.
Ethical question clearly identified (5)
5 pts: Question that relates to an ethical dilemma clearly identified.
4 pts: Question suggests an ethical dilemma but is ambiguous, vague, or not
clearly identified.
3 pts: Question does not clearly relate to an ethical dilemma or is inappropriate
for topic.
0 pts: Question not identified.
Basic bioethical concepts involved identified and explained (5)
5 pts: Concepts clearly identified and their logical relation to the ethical question
is explained.
4 pts: Concepts are identified, but their relationship to the question is illogical or
not
explained.
3 pts: Inappropriate concepts are identified, and no explanation is provided.
0 pts: Concepts are neither identified nor explained.
Minimum of 3 alternative options generated (5)
5 pts: 3 alternative options described
4 pts: 2 alternative options described
3 pts: 1 option described
0: Description of options is missing
Option 1 (10)
10 pts: Option thoroughly evaluated based on principles, consideration of
perspectives,
implications, concessions, and costs/benefits.
8 pts: Evaluation of option is adequate, but certain aspects lack depth. The
discussion of principles, implications, concessions, and cost/benefits would
benefit from further exploration and development.
6: Evaluation of option is attempted, but Important aspects may have been
missed or are incorrectly interpreted.
0 pts: Option is not described.
Option 2 (10)
10 pts: Option thoroughly evaluated based on principles, consideration of
perspectives,
implications, concessions, and costs/benefits.
8 pts: Evaluation of option is adequate, but certain aspects lack depth. The
discussion of principles, implications, concessions, and cost/benefits would
benefit from further exploration and development.
6: Evaluation of option is attempted, but Important aspects may have been
missed or are incorrectly interpreted.
0 pts: Option is not described.
Option 3 (10)
10 pts: Option thoroughly evaluated based on principles, consideration of
perspectives,
implications, concessions, and costs/benefits.
8 pts: Evaluation of option is adequate, but certain aspects lack depth. The
discussion of principles, implications, concessions, and cost/benefits would
benefit from further exploration and development.
6: Evaluation of option is attempted, but Important aspects may have been
missed or are incorrectly interpreted.
0 pts: Option is not described.
Decision clearly identified (5)
5 pts: Final decision is readily identified.
4 pts: Final decision is identified, but may be unclear or vague
3 pts: Final decision is alluded to, but may be incomplete or fragmentary.
0 pts: Final decision is not identified.
Justification provided based on comparison of options (25)
25 pts: Thorough reference made to the consideration of perspectives, facts, and
principles involved. There is clear articulation of the rationale behind the
decision. Explanation is logical and presents at least 3 supporting examples.
22 pts: Reference made to the consideration of perspectives, facts, and
principles involved. Articulation of the rationale behind the decision is mostly
complete. Explanation is logical and presents at least 3 supporting examples.
19 pts: Partial reference is made to the consideration of perspectives, facts, and
principles involved, but key points may be missing. The rationale behind the
decision may be incomplete. The explanation may not follow logically, or less
than 3 supporting examples are present.
16 pts: The consideration of perspectives, facts, and principles involved is
incomplete. The rationale behind the decision is not clearly explained. Evidence
of a logical justification for the decision reached is scant or absent, or less than 2
supporting examples are present.
15 pts or less: The consideration of perspectives, facts, and principles involved is
attempted. Evidence of a logical justification for the decision reached is scant or
absent. Supporting examples, if provided, are insufficiently developed or do not
relate to the decision made.
TOTAL POINTS: 100
What is the ‗right‘ thing to do in the following cases?
1. You are waiting with a few people to board a bus. The bus pulls up and
before you can board the driver gets out and goes into the convenience
store to get coffee. You are the last to get on the bus. Do you pay your
fare?
2. As a nurse, you are the last person to see Mr. Doe before he dies in the
hospital. You believe he has become mentally incompetent in the last few
hours and in that time he has rewritten his will. In the new will he viciously
attacks each member of his family. He then cuts every family member out
of the will, leaving his entire fortune to the Psychic Hotline. Mr. Doe asks
you to make sure the new will gets to his lawyer. The document will most
likely be thrown out of court, but not before the damage to the family is
done. Do you carry out Mr. Doe‘s last request?
What is the ‗right‘ thing to do in the following cases?
3. You are waiting with a few people to board a bus. The bus pulls up and
before you can board the driver gets out and goes into the convenience
store to get coffee. You are the last to get on the bus. Do you pay your
fare?
4. As a nurse, you are the last person to see Mr. Doe before he dies in the
hospital. You believe he has become mentally incompetent in the last few
hours and in that time he has rewritten his will. In the new will he viciously
attacks each member of his family. He then cuts every family member out
of the will, leaving his entire fortune to the Psychic Hotline. Mr. Doe asks
you to make sure the new will gets to his lawyer. The document will most
likely be thrown out of court, but not before the damage to the family is
done. Do you carry out Mr. Doe‘s last request?
Use the ethical decision making framework to determine he „right‟ thing to
do in one more scenario:
The man in a southern town is guarding the courthouse against a mob that is
about to storm it by force, in order to capture a black prisoner and lynch him even
before trial. If the mob is frustrated, many people may be killed in the ensuing
riot. Should the sheriff deliver the prisoner to the mob?
Use the ethical decision making framework to determine he „right‟ thing to
do in one more scenario:
The man in a southern town is guarding the courthouse against a mob that is
about to storm it by force, in order to capture a black prisoner and lynch him even
before trial. If the mob is frustrated, many people may be killed in the ensuing
riot. Should the sheriff deliver the prisoner to the mob?
Use the ethical decision making framework to determine he „right‟ thing to
do in one more scenario:
The man in a southern town is guarding the courthouse against a mob that is
about to storm it by force, in order to capture a black prisoner and lynch him even
before trial. If the mob is frustrated, many people may be killed in the ensuing
riot. Should the sheriff deliver the prisoner to the mob?
Use the ethical decision making framework to determine he „right‟ thing to
do in one more scenario:
The man in a southern town is guarding the courthouse against a mob that is
about to storm it by force, in order to capture a black prisoner and lynch him even
before trial. If the mob is frustrated, many people may be killed in the ensuing
riot. Should the sheriff deliver the prisoner to the mob?
Universal Ethical Principles
Principle Definition For example…
Autonomy
Beneficence
(do good)
Non-
maleficence
(do no harm)
Justice
Strict
Utilitarianism
Universal Ethical Principles
Teachers‘ Guide
Principle Definition For example…
Autonomy The duty to maximize the Parent respecting the privacy of child‟s bedroom
individual's right to make
his or her own decisions
Beneficence The duty to do good both for Parent helping child with homework
(do good) the individual and for all
Non- The duty to cause no harm, Parent refraining from belittling a child out of anger
maleficence both for the individual and
for all
(do no harm)
Justice The duty to treat all fairly, Parent being fair between siblings
distributing the risks and
benefits equally
Definitions obtained from: http://www.stedwards.edu/ursery/norm.htm#foundation
Examples from ―The Greater Good Curriculum‖, Northwest Association for Biomedical Research
Ethical Decision Making Framework
The issue:
Relevant Facts
Stakeholders Primary concerns
1.
2.
3.
4.
5.
6.
Reasons you should… Reasons you shouldn‟t …
The best decision is….
because…
NAME________________________ DATE____________ CLASS___________
STEM CELL RESEARCH
To begin your research, log on to the following website:
http://gslc.genetics.utah.edu/units/stemcells/
Click on “What is a Stem Cell?” then answer the following questions:
1. What is a stem cell?
2. When a stem cell receives a signal, it begins to differentiate. What does
that mean?
3. Draw and Label three different types of cells that a stem cell can become:
Cell type #1 Cell type #2 Cell type #3
Name: Name: Name:
Drawing: Drawing: Drawing:
Click on “What are Some Different Types of Stem Cells?”
4. What are early embryonic stem cells?
5. Define Totipotent:
6. What are blastocyst embryonic stem cells?
7. Define Pluripotent:
8. a. What are fetal stem cells?
b. Are fetal stem cells Totipotent or Pluripotent?
9. What are umbilical cord stem cells?
10. Define Multipotent:
11. a. What are adult stem cells?
b. Are they Totipotent, Pluripotent, or Multipotent?
*Use this answer sheet to ACE the on-line quiz!!
Click on “Stem Cell Therapies Today” to trace the basic steps in a bone
marrow transplant. Read the information on the site, and then fill in the missing
information below:
12. Step one- The patient has cancer of the leukocytes or
____________________
Step two- Leukocytes are made from stem cells in the _________
__________.
Step three- Successful treatment of leukemia involves getting rid of all
abnormal leukocytes and the patient‘s __________________ through a
combination of ___________________ and ___________________
Step four- Donor bone marrow containing healthy ____________
____________ are introduced into the patient‘s ____________________.
Step five- If the transplant is successful, the stem cells will migrate into
the patient‘s __________________ and ________________________
______________________________________________________.
Click on “Additional Resources”, then “Yahoo News Full Coverage of
Human Stem Cell Research”
13. List FIVE new treatments that stem cells may provide in the future:
a)
b)
c)
d)
e)
Click on “Stem Cell Therapies in the Future,” then “View student
Activity”
1. Why would using a patient‘s own stem cells to
grow new tissue be better than using donor
cells?
2. Please read the information carefully, then
fully explain three difficulties researchers
have to overcome for this therapy to become
available to patients in the future:
a.
b.
c.
3. Research into the use of a patient‘s stem cells for therapy such as this is
currently prohibited by law.
a. What is your opinion about this ruling?
b. Why do you think that the government has enacted such a law?
(Why is stem cell research controversial, even though it may hold
the key to curing things like Alzheimer‘s, Parkinson‘s disease and
diabetes?) Also, see diagram on next page.
Teacher‟s Guide to
Stem Cell research:
To begin your research, log on to the following website:
http://gslc.genetics.utah.edu/units/stemcells/
Click on ―What is a Stem Cell?‖ then answer the following questions:
5. What is a stem cell? A cell in the body whose job is not yet determined
6. When a stem cell receives a signal, it begins to differentiate. What does
that mean? Gradually change into a particular cell type
7. Draw and Label three different types of cells that a stem cell can become:
Cell type #1 Cell type #2 Cell type #3
Name: Name: Name:
Drawing: Drawing: Drawing:
Answers will vary
Click on ―What are Some Different Types of Stem Cells?‖
8. What are early embryonic stem cells? Cells from the first step in human
development, when the fertilized egg begins to divide.
5. Define Totipotent: Early embryonic stem cells can differentiate to become
any type of cell.
8. What are blastocyst embryonic stem cells? 7 days after fertilization, cells
that will eventually become a fetus are found inside a hollow ball of cells
9. Define Pluripotent: stem cells that can become ALMOST any type of cell in
the body
8a. What are fetal stem cells? After the 8th week of development, the embryo
is called a fetus
b. Are fetal stem cells Totipotent or Pluripotent? Pluripotent
9. What are umbilical cord stem cells? Blood cells found in the umbilical cord
of a newborn
10. Define Multipotent: stems cells that can differentiate into a limited range of
cell types
11a. What are adult stem cells? Cells found in infants, children and adults that
are found in already developed tissues.
b. Are they Totipotent, Pluripotent, or Multipotent? Multipotent
Click on “Stem Cell Therapies Today” to trace the basic steps in a bone
marrow transplant. Read the information on the site, and then fill in the missing
information below:
Step one- The patient has cancer of the leukocytes or white blood cells
Step two- Leukocytes are made from stem cells in the bone marrow
Step three- Successful treatment of leukemia involves getting rid of all abnormal
Leukocytes and the patient‘s bone marrow through a combination of
radiaton and chemotherapy
Step four- Donor bone marrow containing healthy stem cells are introduced into
The patient‘s bloodstream
Step five- If the transplant is successful, the stem cells will migrate into the
Patient‘s bone marrow and begin producing new healthy leukocytes.
Click on “Additional Resources”, then “Yahoo News Full Coverage of
Human Stem Cell Research”
14. List FIVE new treatments that stem cells may provide in the future:
a) Answers will vary
b)
c)
d)
e)
Click on “Stem Cell Therapies in the Future,” then “View student
Activity”
4. Why would using a patient‘s own stem cells to
grow new tissue be better than using donor
cells?
Reduce or eliminate the risk of rejection
5. Please read the information carefully, then fully
explain three difficulties researchers have to
overcome for this therapy to become available to
patients in the future:
a) If adult stem cells are used, those cells may age and
malfunction more quickly than other cells.
b) Stem cells may divide uncontrollably in the body and create
tumors
c) There may be complications caused by artificially growing
cells in Petri dishes in the lab.
3. Research into the use of a patient‘s stem cells for therapy such as this is
currently prohibited by law.
a) What is your opinion about this ruling?
Answers will vary
b) Why do you think that the government has enacted such a law? (Why is stem
cell research controversial, even though it may hold the key to curing things like
Alzheimer‘s and Parkinson‘s disease).
Answers will vary
Wednesday, Jul. 11, 2001
The Great Debate Over Stem Cell Research
Scientists believe stem cells from human embryos could hold the key to
treatments and cures for disease. Pro-life advocates argue using the cells
is the equivalent of taking a life, even if it is to save life.
By JESSICA REAVES
Suddenly, stem cells are everywhere. Once relegated to the depths of esoteric
health journals, the microscopic clusters have made their way to the nation‘s
front pages.
The complexity and drama surrounding these relatively simple cells has
increased due a ticking clock: By the end of the month, President Bush is
scheduled to decide whether to continue federal funding for stem cell research.
The question of using stem cells for research is intrinsically scientific, and yet has
become the political cause du jour in Washington. The debate surrounding the
cells threatens to rend traditional alliances, challenging our comprehension of life
and leaving some abortion opponents in a very uncomfortable spot: Is it possible
to protect the strict boundaries inherent in the "sanctity of life" and still harvest
these cells to help the living among us?
Bringing the cells to light
In scientific terms, stem cells‘ rise to fame has been straightforward: Recent
studies suggest these cells may hold the secret to treatment — even cures — for
some of our most baffling diseases, including Alzheimer‘s and Parkinson‘s.
In political terms, however, the ascension has been less smooth. At the heart of
the stem cell debate is a battle over abortion — but with a twist. Yes, these are
cells from embryos. And according to the religious orthodoxy, an embryo is life.
Indeed, some pro-life advocates have likened using stem cells for research to
what Nazi doctors did during World War II. But these cells also hold great
promise for millions of ailing patients and their families. Moreover, many of the
embryos would otherwise be unceremoniously discarded. The political stakes are
high, and almost everyone involved in the debate has been obliged to reevaluate
their position.
The political debate
For the first time in his presidency, George W. Bush finds himself in what may
prove an unwinnable situation. In the next few weeks, the President is expected
to decide whether to continue federal funding for research on human stem cells.
The administration itself is sharply divided on the issue; HHS Secretary Tommy
Thompson is fiercely in favor of continuing the research, while White House chief
of staff Karl Rove, with one eye on the Catholic vote, has cast an adamant ballot
against it. (This, despite the fact, that the majority of Catholic voters support
federal funding.)
Embryonic stem cells are controversial. They come from the inner cell mass of a
blastocyst, the term for a fertilized egg four days after conception. But while
many pro-life advocates stand firm in their opposition to using embryonic cells for
research, others, including Senator Orrin Hatch, have cast their lot with the
scientific community in favor of continuing research funding. High-profile activists,
including actor Michael J. Fox, who suffers from Parkinson‘s disease, have
appeared before congressional subcommittees urging that research continue.
(Stem cell research, of course, will continue on some level no matter what the
President decides; private foundations, clinics, and drug companies are
unaffected by government funding).
The scientific debate
What can stem cells do for us? We don‘t know, exactly. We do know, however,
that because stem cells are undifferentiated, (they aren‘t committed to becoming
a liver cell, say, or a blood cell), scientists may be able to prompt them into
becoming whatever type of cell is needed. The cells may also be able to replace
damaged or sick cells in a patient with an injury or degenerative disease.
Where are scientists getting these cells? Until very recently, the vast majority of
stem cells used in research came from discarded (or excess) embryos stored at
in-vitro fertilization clinics. If potential parents decide against having more
children, scientists working with stem cells might ask them to consider donating
the unneeded embryos to research.
In the most controversial method, scientists can also pull stem cells from aborted
fetuses, first asking for signed consent from a patient who‘d previously (and
independently) decided to terminate her pregnancy. This is the procedure most
often highlighted by pro-life activists who oppose supporting stem cell research.
As opponents of stem cell research are quick to point out, there are other, slightly
less controversial means of culling the precious cells. Unfortunately, none of
those methods seems to yield stem cells with the same vitality and versatility as
those taken from embryos.
Is there another way?
Adult stem cells taken from the blood or organs of healthy adults have recently
demonstrated an unexpected adaptability in lab experiments. But these cells are
marginally helpful to scientists, and do not show the same promise as those
culled from embryos. Adult cells are fairly set in their ways, and don‘t seem to
grow or replicate themselves as quickly as their younger counterparts.
New techniques for gathering the cells are in quiet development; scientists are
generally wary of disclosure, because public reaction is difficult to predict.
Revelations that scientists at a privately-funded Virginia fertility clinic are growing
human embryos with the intent of harvesting stem cells have provoked
widespread hand-wringing, among both advocates and opponents of stem cell
research. Advocates worry that publicizing such a blatant and systematic cell
harvesting procedure can only harden hearts against the science; in the crude
terms of public relations, using stem cells from discarded embryos is one thing,
but purposefully creating an embryo only to dismantle it is something else
altogether. Opponents of the research see the Virginia clinic‘s methodology as
the best indication yet that we are carelessly sliding down the slippery slope of
destroying human life in order to advance our scientific curiosity.
Science is the search for answers
Beyond the political debate swirling around stem cells, there remains a great deal
of scientific skepticism. Will stem cells help us understand the course of cellular
development and differentiation? Could we develop stem cells for transplant that
did not set off an autoimmune attack from their new host? Some day in the
future, could scientists use stem cells to eliminate the need for human subjects in
drug tests?
For pro-life advocates, the moral cost of continuing such research outweighs any
potential benefits. For scientists, however, the possibilities are both awe-inspiring
and bewildering. No one denies the moral dilemma of the stem cell debate. But
to turn back now, researchers say, would be tantamount to turning our backs on
a bright, sustaining light because we are terrified of the shadows it creates.
NAME________________________ DATE____________ CLASS___________
The Great Debate Over Stem Cell Research
Why is stem cell research controversial?
Read the Time magazine article explaining the debate over stem cell research,
then use information from the article to answer the following questions.
1. Briefly describe what stem cells are. Distinguish between embryonic stem
cells and adult stem cells.
2. What are some possible benefits of stem cell research?
3. Why is stem cell research controversial? What groups oppose stem cell
research and why? What groups support stem cell research?
4. What is the problem with using adult stem cells instead of embryonic stem
cells?
5. What are some big questions that remain in the scientific community about
stem cells?
NAME________________________ DATE____________ CLASS___________
The Great Debate Over Stem Cell Research
Why is stem cell research controversial?
Read the Time magazine article explaining the debate over stem cell research,
then use information from the article to answer the following questions.
6. Briefly describe what stem cells are. Distinguish between embryonic stem
cells and adult stem cells.
Stem cells are undifferentiated cells. They aren‟t committed to becoming a
liver or blood cell for example. Embryonic cells come from the inner cell
mass of a blastocyst, the term for a fertilized egg four days after
conception. Adult stem cells come from the blood or organs of healthy
adults.
7. What are some possible benefits of stem cell research?
Stem cells may be used to treat or even cure many diseases, including
Alzheimer‟s and Parkinson‟s. Scientists may be able to prompt stem cells
into becoming whatever type of cell is needed. Cells can be used to
replace damaged or sick cells.
8. Why is stem cell research controversial? What groups oppose stem cell
research? What groups support stem cell research?
Embryonic stem cell research is controversial because the cells come from
embryos and according to some, an embryo is a life. Some pro-life
advocates and religious groups oppose embryonic stem cell research.
Others, along with scientists and high-profile activists, including Michael J.
Fox, support the research.
9. What is the problem with using adult stem cells instead of embryonic stem
cells?
Adult stem cells do not show the same promise as stem cells. They don‟t
seem to grow or replicate themselves as quickly as their younger
counterparts.
10. What are some big questions that remain in the scientific community about
stem cells?
Will stem cells help us understand the course of cellular development and
differentiation? Could we develop stem cells for transplant that did not set
off an autoimmune attack? Could scientists use stem cells to eliminate the
need for human test subjects in drug tests?
STEM CELLS CASE HISTORY OPTION 1
PARKINSON’S DISEASE
A 60 year old caucasian male we will call ―Ed‖ just retired from the Seattle Police
Department. He has been experiencing tremors in his right hand that have become
progressively worse. His doctor diagnosed his problems as Parkinson’s disease and
has been treating him with L-dopa (levodopa—a drug which is converted into
dopamine, the chemical which the dead nerve cells produced in the part of the brain
affected in Parkinson’s disease), which was initially successful, but is no longer
effective. Other available drugs have shown no therapeutic value for Ed’s
symptoms. Ed is increasingly concerned about difficulty with walking and has
stopped golfing and walking with his wife. He is also losing his sense of taste, and is
beginning to have impaired speech. His family is considering placing him in an
extended care facility as his physical difficulties are making it very stressful for his
wife to care for him.
The symptoms appear to be worsening and his doctor says that the only possible
treatments remaining are experimental (still in the research stages—not accepted as
standard treatment). Two involve types of brain surgery, one known as
cryothalamotomy, and one known as pallidotomy, both which have shown some
effectiveness in reducing symptoms. The other is a stem-cell transplant that has
shown great promise in some patients, but also has had the effect in some patients
where it appears the stem-cell transplant ―over-grew‖ and produced too much
dopamine. Ed’s health insurance company has agreed to pay for 80% of the costs of
any experimental treatments.
Ed has asked his doctor to pursue the experimental treatment with stem cells, but is
now concerned about the ethical issue surrounding the possible source of the stem
cells.
NAME___________________________ DATE______________
CLASS____________
PARKINSON‘S DISEASE QUESTIONS
1. What are the possible sources of stem cells for Ed‘s transplant?
2. Why is Ed concerned about the source of the stem cells—what ethical issue is
he concerned about?
3. What are the essential facts of this case—the biological, ethical, economic,
social, or political considerations?
4. Who are the stakeholders? List each individual, or group, and state their
concerns about this situation.
5. If you have changed your mind about what the ethical issue is, give your new
response now. Otherwise, restate the ethical question using the word ―should‖ or
―ought‖ in your statement/question.
6. Brainstorm as many possible options/solutions as you can for how Ed could
proceed. (Use another sheet of paper if more space is needed.)
7. Next to each of your above solutions, place letters from the following
statements that apply to that option: (an option may have more than one letter
by it, or none at all)
A. would support a good general rule for people to follow in similar situations
B. would support or develop character traits we value in individuals
C. would produce the most good and do the least harm
D. responsive to the individual needs of those involved; considers relationships
of them
E. provides for Ed‘s autonomy
F. provides for fairness for the stakeholders
8. Decide on the best option for Ed, and give your justification for choosing that
solution.
STEM CELLS CASE HISTORY OPTION 2
Mutantville, USA
Courtesy University of Utah
http://gslc.genetics.utah.edu
ESC Lifeworks Inc. is a private corporation that has applied for a business license
and has been offered property in the research park of the town of Mutantville, USA.
The corporation wishes to construct a biotechnology research and development
laboratory to develop therapies to treat Parkinson’s disease and other related
neurodegenerative illnesses.
Mutantville is a small town of 25,000 people located a half-hour away from a major
metropolitan area. ESC Lifeworks was attracted to the rural atmosphere combined
with the amenities of the adjacent big city. Both a hospital and an in vitro
fertilization (IVF) clinic with expertise in reproductive medicine are located in
Mutantville. ESC Lifeworks has acquired licensing agreements with the IVF clinic
and the private hospital for the use of human embryos and other resources. The
company has expressed their intent to use human embryonic stem cells from human
embryos to develop treatments to cure diseases.
Considerable controversy has resulted and a town meeting has been called to
discuss whether or not a business license will be issued. The town council and mayor
must vote on the issue after the discussion.
STEM CELLS CASE HISTORY OPTION 3
Embryos-R-Us
Courtesy University of Utah
http://gslc.genetics.utah.edu
Shari and Casey Franklin have been married for 10 years. After trying
unsuccessfully to conceive a child naturally, they sought the services of an in vitro
fertilization (IVF) clinic. After several attempts, the IVF procedure was successful
and Shari became pregnant. Their son Corey is now two years old.
Eight embryos from the Franklins’ IVF procedure remain in cold storage. A local
biotechnology company, Embryos-R-Us, has contacted the Franklins with an offer
to purchase these embryos for $100,000.
The Franklins are having financial difficulties and struggle to make the mortgage
payments on their home. They would like to have another child but cannot afford
the procedure. Embryos-R-Us wishes to use the embryos to develop stem cell lines,
which will be used in research to develop an Alzheimer’s disease treatment. If this
treatment were successful, the benefits to people with Alzheimer’s disease and the
potential profits to the company would be enormous.
Shari and Casey are discussing the possibility of selling the embryos. Put yourself in
their situation. Put yourself in their situation. What would you do?
NAME___________________________ DATE______________
CLASS____________
Embryos-R-Us Questions
1. What are the relevant facts of this case?
2. What are some ethical questions raised by this situation?
3. Who are the stakeholders in this situation? Who will be affected by decisions
that are made?
4. What are the values that play a role in the decision?
5. What are some possible solutions and their consequences?
6. What do you consider to be the best solution and why?
STEM CELLS CASE HISTORY OPTION 4
FETAL FLAW
(based on ―A Law’s Fetal Flaw,‖ U.S. News & World Report, July 21, 2003)
Sharon and Dave have a son, Daniel, who has a genetic disorder called Fanconi
anemia. Children with Fanconi anemia can seem fine at first, but over the years
their bone marrow stops producing new blood cells. They often die in childhood if
they can't get a transplant of blood-forming stem cells from a matched donor--and
perfect matches are scarce. As Sharon and Dave became deeply attached to their
son, they also became deeply afraid that they would lose him to the disease. They
decided to take desperate measures.
They conceived a second child with hopes that there would be a match of tissue
types and hopes for a transplant of the stem cells from the umbilical cord. And
despite all odds, the tests proved promising for a match – it seemed there would be a
happy ending to the story.
But after 15 weeks, sonograms showed that the pregnancy was not going well. The
fetus was not developing a brain. Devastated, Sharon and Dave asked their doctor,
Dr. Wilson, if there could still be hope: if they decided to abort, could they still use
the fetus’ cord blood to save Daniel? Dr. Wilson knew the cord blood wouldn’t
contain enough stem cells at this stage of pregnancy. But the fetal liver is rich in
blood-forming stem cells, and he thought tissue-matched fetal liver could provide
the needed cells. Sharon and Dave decided they would try to store the cells as
insurance, in case David needed a transplant before they could conceive another
matched child.
But Wilson had already turned to the hospital's Center for Bioethics for advice.
Kahn had uncovered a 1993 law that governs fetal tissue transplantation research.
"It speaks very clearly to this situation," Kahn says. Any attempt to use these fetal
cells, he realized, might be a felony that carried a fine and 10 years in prison.
The law was written at a time when doctors were trying to treat diseases ranging
from diabetes to Parkinson's with cells transplanted from aborted fetuses. Early
results looked promising, and government-funded researchers wanted to study the
treatments as well. But lawmakers worried that women might get pregnant with the
intention of aborting their fetuses to obtain transplant tissue for, say, a sick relative.
Indeed, some women said on television that they wanted to do just that. So Congress
passed a law holding that a woman who has an "induced" abortion can't direct the
donation of fetal tissue to a specific person or a family member.
As Wilson points out, the case of Dave and Sharon presents "the ultimate in
directed donation. This fetus was tested, in part, to be a donor." And a medical
procedure to remove the dying fetus could count as an induced abortion.
Time is running out for Daniel. His parents don’t know how long he will be able to
last without treatment for his anemia. What are their options, and what should they
do?
Health & Medicine 7/21/03
A law's fetal flaw
Parents can now conceive babies whose cells can cure a sick sibling.
But what if the pregnancy goes wrong?
By Nell Boyce
Just about a year ago, a woman we'll call Susan lay nervously in a
maternity ward. For five days, she listened to mothers in labor and For more information, visit
families joyfully greeting new babies. But her own child was dying our news briefing on stem-
in her womb. A complication from a prenatal test had made her cell research.
waters break far too early, after only 16 weeks of pregnancy, and
the fetus had no chance of surviving. Susan's doctors wanted to
remove it quickly, before infection set in, and they warned that
delay could endanger her life. But still, for five agonizing days, she waited.
Hundreds of miles away, at the University
of Minnesota in Minneapolis, doctors,
lawyers, and ethicists argued about what
to do. Could they legally and ethically use
the doomed fetus as a source of transplant
tissue, as if it were an organ donor? After
all, the baby Susan carried was special.
He was created, in part, to save his older
brother's life.
The story of Susan and her husband,
whom we'll call Dan, dramatically
illustrates how an emerging medical
technology has run smack into a 10-year-
old law that restricts what can be done
with fetal tissue. By genetically screening
embryos, doctors can now help families
affected by hereditary diseases conceive a healthy child. They can also screen the embryo's
tissue type to make sure blood from the new child's umbilical cord can provide life-saving cells for
a sick sibling. So far four ill children have successfully received transplants from specially
conceived babies--including one just announced last Saturday.
But some families haven't been so lucky. Their pregnancies suffered complications that led to
abortions--and that meant their fetuses were legally off limits as a source of tissue. The transplant
expert Susan and Dan consulted, John Wagner at the University of Minnesota, is a leader in
umbilical cord blood transplants and knows the curative power of stem cells from matched
siblings. He wants to be able to help parents in tough situations like Susan and Dan, but the law
forbids it. "It didn't prepare for nuances in cases like this," says Wagner. Yet it's not clear how to
change that law without potentially opening the way to a disturbing scenario: parents who start a
pregnancy intending all along to abort it and harvest fetal tissue.
That idea never entered the minds of Susan and Dan; Dan calls it "a totally bizarre thought."
Instead, they just wanted a family of healthy children. Their tale began several years ago, with the
birth of their son "David." David needed surgery to fix a problem with his esophagus, one often
associated with a genetic disorder called Fanconi anemia. His doctors tested him for the disease,
and when the test came up positive, Susan remembers, she and Dan "cried like two babies."
Children with Fanconi anemia can seem fine at first, but over the years their bone marrow stops
producing new blood cells. They often die in childhood if they can't get a transplant of blood-
forming stem cells from a matched donor--and perfect matches are scarce. "We were scared to
fall in love with him and lose him," Susan says. But as David grew into a toddler and his funny
little personality shone through, Susan and Dan grew desperately attached and deeply afraid.
"God, we don't want to lose him," says Susan. "We'd do anything."
And, in fact, they learned that they could do something. Three years ago, a couple named Lisa
and Jack Nash tried a cutting-edge new technology to save their daughter Molly, who also had
Fanconi anemia. The Nashes underwent in vitro fertilization to make multiple embryos in a lab
dish, and doctors took a cell or two from each embryo for testing. They looked for the Fanconi
anemia gene and also screened for embryos with the same tissue type as Molly's. Only healthy,
perfectly matched embryos were used to start a pregnancy, and a son, Adam, arrived on Aug. 29,
2000. Wagner and his team took blood-forming stem cells from Adam's umbilical cord and used
them to replace Molly's failing bone marrow. These days, Molly is a spunky 8-year-old who takes
dance lessons, with a healthy little brother.
Susan and Dan decided to try the same thing. Fate seemed to smile on them--the doctors
implanted one perfect embryo, and Susan got pregnant. "Everyone was practically celebrating,"
she says.
But after 15 weeks, sonograms suggested something had gone wrong. An image of the fetus
showed a large black space in the skull. "The doctor told me the brain was all water," recalls Dan.
While the fetus didn't have Fanconi anemia, it seemed to have some other problem. Devastated,
the parents called Wagner to ask an obvious question: If they decided to abort, could they still
use the fetus's cord blood to save David?
Salvaging cells. Wagner knew the cord blood wouldn't contain enough stem cells at this stage of
pregnancy. But the fetal liver is rich in blood-forming stem cells, and he thought tissue-matched
fetal liver could provide the needed cells. Susan and Dan decided they would try to store the cells
as insurance, in case David needed a transplant before they could conceive another matched
child.
To make sure that whatever had gone wrong with the fetus hadn't hurt the blood-forming cells,
the family went ahead with a previously scheduled amniocentesis test. The test took place on a
Friday. Susan remembers sitting on the couch that afternoon at her mother's house when
suddenly her water broke. She and Dan rushed to the hospital and called Wagner again.
But Wagner had already turned to Jeffrey Kahn at the university's Center for Bioethics for advice.
Kahn had uncovered a 1993 law that governs fetal tissue transplantation research. "It speaks
very clearly to this situation," Kahn says. Any attempt to use these fetal cells, he realized, might
be a felony that carried a fine and 10 years in prison.
The law was written at a time when doctors were trying to treat diseases ranging from diabetes to
Parkinson's with cells transplanted from aborted fetuses. Early results looked promising, and
government-funded researchers wanted to study the treatments as well. But lawmakers worried
that women might get pregnant with the intention of aborting their fetuses to obtain transplant
tissue for, say, a sick relative. Indeed, some women said on television that they wanted to do just
that. So Congress passed a law holding that a woman who has an "induced" abortion can't direct
the donation of fetal tissue to a specific person or a family member.
As Wagner points out, the case of Dan and Susan presents "the ultimate in directed donation.
This fetus was tested, in part, to be a donor." And a medical procedure to remove the dying fetus
could count as an induced abortion.
For days, Dan and Susan waited, trying to keep the fetus alive while Kahn and Wagner met with
other experts and the University of Minnesota's lawyers to decide whether they could proceed. "It
was back and forth over and over and over again," says Wagner. "We thought it was the right
thing to do, and yet we couldn't figure out how to do it." Ultimately, the university decided it
couldn't take the legal risk. Wagner understood, but he says: "I hated the decision."
It fell to him to call Susan and Dan. "That's when I think I finally got very upset," says Susan, who
had remained calm during her five-day ordeal. "We were so angry that we couldn't do this." Dan
remembers signing papers to have the fetus buried.
Ethicist Thomas Murray of the Hastings Center, who studies technology's effect on families, says
the law created a cruel dilemma. "Let's have some sympathy. We can never read what's in
someone's heart. But from what we can tell about their intentions, they were all in line with what it
takes to be good, caring parents."
Trouble ahead. Similar cases are sure to come up, Wagner says. Lisa Nash nearly had a
miscarriage during her pregnancy with Adam, whose cells cured his sister Molly. At the time,
doctors thought about trying to collect the fetal liver, but that pregnancy had a happy ending. Still,
Wagner knows of another couple who, like Susan and Dan, went through embryo screening and
then had to end the pregnancy, although they didn't ask about saving the fetal cells. And embryo
screening is on the rise as more genetic diseases, including common conditions like sickle cell
anemia, prove treatable with cord blood transplants. Wagner knows of some 30 families who
have had IVF embryos screened for genetic diseases and tissue type.
"It's going to take a change in the law" to keep other parents from having to throw away tissue
that might some day help a deathly ill child, says Wagner. "But how do you do that," he asks,
without also creating a loophole that could lead to parents' making embryos to order and then
aborting them to get tissue?
He knows of at least one couple, in a difficult situation, who seriously considered that route. Their
son had adrenoleukodystrophy--the disease in the movie Lorenzo's Oil--a progressive nerve
illness that is almost always fatal in boys. A transplant of cells from an umbilical cord can treat it,
and the family decided to undergo embryo screening to try to have a healthy child who could be a
donor. But as they started the process, the mother wondered what would happen if, instead of
producing matched embryos totally free of the disease gene, they ended up with female embryos
that had a milder version of the disease. Could they start a pregnancy and then abort it to get
tissue that might ameliorate their son's illness?
Wagner said no, but the experience troubles him. He wonders what other transplant experts
might do in the same situation. Not everyone would find the idea offensive. After all, abortion is
legal in this country. And a few women have already had abortions as part of an effort to get
tissue for a transplant. Before embryo screening, some parents whose child needed a sibling-
donor would get pregnant the old-fashioned way, gambling that the baby would be a healthy
match. In at least three cases, older women worried about their declining fertility decided to have
abortions when tests like amniocentesis showed that a healthy fetus was not a match; they
wanted to try again as soon as possible. Embryo screening was meant to remove the incentive
for such abortions--and Wagner abhors the ironic prospect that the technology could be used to
generate fetuses destined to be destroyed.
Some legal experts think the current law on fetal tissue transplantation could be rewritten without
opening the door to abuses. John Robertson at the University of Texas School of Law in Austin
sat on a 1988 advisory panel on fetal tissue transplantation. "One could easily write an exception
that would be workable," he says--a provision allowing directed donation if it would save
someone's life and the abortion took place only because of danger to the mother or fetus. "Those
exceptions weren't built into the law, and they clearly should be there."
Inviting abuse? Others disagree, among them Douglas Johnson, legislative director for the
National Right to Life Committee, whose group opposes all abortions except in rare cases where
the mother's life is threatened. His group fought the original law because it does allow research
on aborted tissue, and he says changing it now to add any exceptions "would be to invite abuse."
Some find embryo selection itself morally repugnant, likening it to Nazi eugenics. "These
procedures treat human beings at the earliest stage of biological development as a means to an
end," says Joseph Howard, a Roman Catholic priest and biologist who serves on the bioethics
committee of the American Life League. Add abortion to the mix, and the picture becomes
"particularly gruesome," he says, "because it involves killing one life to save another."
Such passions explain why Susan and Dan wish to remain anonymous, even though they hope
their story spurs a change in policy. "We can't let this happen to another family," says Susan,
whose greatest fear is what will happen to David if they can't find a match. Since that awful week
last year, she has tried twice more to get pregnant after embryo screening. The first time, the
implanted embryos didn't start a pregnancy. The next time, this spring, she miscarried in the first
trimester. "We lost our chance," she says, "because of this law."
Posted on Mon, Jul. 21, 2003 @ philly.com
Biological safety deposit
By Marie McCullough
Inquirer Staff Writer
In 1988 in Paris, a boy with a life-threatening form of anemia was saved by a new,
experimental therapy - a few ounces of blood from his newborn sister's umbilical cord.
Soon, what had been just a waste product of childbirth was being hailed as a therapeutic
miracle. Facilities for freezing and storing umbilical cord blood began to spring up around the
world.
Now, 15 years after that first "cord blood transplant," it is clear the procedure has several
advantages over a bone marrow transplant, the older, more common way of rebuilding
damaged blood and immune systems.
But as often happens with breakthroughs, marketing has gotten ahead of science.
Cord blood transplants remain rare and experimental - worldwide, there have been fewer than
2,500 - and the vast majority are arranged through public, nonprofit cord blood storage
banks, which operate like blood banks. Nonetheless, more and more parents are paying
commercial storage companies to preserve their newborns' cord blood, attracted by
advertising touting a "once in a lifetime" opportunity to buy "biological insurance."
The chance of needing privately stored cord blood is so remote that the American Academy of
Pediatrics has come out against routine private banking, and several leading transplant
physicians have criticized the practice as "unrealistic and deeply exploitative."
Still, commercial companies now have well over 100,000 cord blood specimens, at least twice
as many as public banks.
Parents who can afford private storage - about $1,000 initially plus $100 a year - consider it a
small price to pay for a sense of security.
Even some experts feel that way. Transfusion medicine specialist Zbigniew Szczepiorkowski,
chair of a committee of the American Association of Blood Banks, which offers voluntary
accreditation to cord blood banks, said he considers private storage "medically unjustified."
Yet he and his wife are paying to do just that with their son's cord blood.
•
Cord blood is medically valuable because, like bone marrow, it is rich in blood stem cells, the
precursors of red blood cells, infection-fighting white blood cells, and clot-forming platelets.
A patient whose own blood cells have been destroyed by high-dose chemotherapy and
radiation can be given a transplant - actually, it's more like a transfusion - of stem cell-laden
bone marrow or cord blood to resupply his entire blood and immune systems.
While a bone marrow or cord blood transplant is a risky last resort, the procedure has been
used successfully to treat about 70 genetic, blood and cancer-causing disorders, including
leukemia, lymphoma, aplastic anemia and sickle-cell anemia.
It is crucial that the transplanted cells have immune proteins that closely match the patient's
own. If not, the transplant may be rejected or, worse, attack the patient's tissues.
With some diseases in adults, this tissue-matching problem can be avoided by removing some
of the patient's own bone marrow before chemotherapy, then putting it back to rebuild the
blood supply. Such a self-transplant is ultra-rare with cord blood, however, because many
childhood blood disorders are inherited; a child's own cord blood would likely reintroduce the
disease.
Frances Verter, a Princeton-trained astrophysicist, learned about all this the horrible way - by
losing her first child to leukemia, a blood cancer.
Shai Miranda Verter spent much of her not-quite five years in hospitals, including Children's
Hospital of Philadelphia, where she received a bone marrow transplant. Despite a brave fight,
she died in 1997.
In 1998, Verter became pregnant with her second child. She decided to privately store the
precious drops of cord blood, mostly out of fear and grief.
"I knew pediatric cancer... wasn't supposed to happen again, but I was just being very
paranoid because a one-in-five-million disease struck my first child," recalls Verter, who works
at NASA's Goddard Space Flight Center in Greenbelt, Md.
But getting basic, unbiased information about the nation's cord blood banks was tough.
Ultimately, she assembled an encyclopedic consumer's guide to cord blood storage options. As
a tribute to Shai, and to fill an obvious void, Verter maintains it on a Web site,
http://www.parentsguidecordblood.com/. Numerous public and private banks now link to it.
Verter does not offer recommendations. Personally, though, she is a fan of private storage.
Her data show private U.S. companies have had just 71 transplants. Still, she believes that
someday scientists will figure out how to use blood stem cells to regenerate damaged nerves,
muscles and other tissues - thus making a hoard of perfectly matched stem cells invaluable.
But as her Web site explains, stem cell science is not there yet, not even close.
Only the primitive stem cells found in early embryos are known to be able to turn into all
types of tissues, and scientists have barely begun to understand how.
That is not the impression private banks foster.
At CorCell - a Philadelphia-based, eight-year-old, private bank that has never had any of its
7,000 cord blood units transplanted - president Marcia Laleman said: "There is research going
on that demonstrates applications in diabetes, lupus, Parkinson's and other diseases... . All
our advisers say the uses will explode in the next five to 10 years."
While that is debatable, cord blood does have advantages. It is simple to collect and retrieve
from storage; a registered bone marrow donor, in contrast, must be located and go through a
painful procedure when the marrow is needed. Cord blood stem cells also multiply more
rapidly, are more forgiving of imperfect tissue matches, and are less likely to attack the
patient's own tissues than marrow stem cells.
The problem is that all blood-making stem cells, no matter the source, have limitations.
Unlike embryonic stem cells, blood stem cells cannot multiply in a culture dish. (At least one
group of researchers claims to have overcome this problem, but the jury is out.) Also,
scientists cannot distinguish stem cells from other cells in cord blood or bone marrow; they
use white cell surface proteins as a rough indicator of the presence of stem cells.
Compounding these problems, umbilical cords simply do not yield much blood. Public storage
banks generally reject a cord blood specimen smaller than 40 milliliters - about three
tablespoons - because it is unlikely to contain enough stem cells to transplant even to a small
child. (To ensure an ample number of stem cells for an adult transplant, bone marrow is
preferred.)
Although the amount of cord blood is crucial, some private banks do not set a minimum for
storage.
"I've had calls from families where they saved 14 milliliters or seven milliliters. It's worthless,"
said cord blood transplant pioneer Joanne Kurtzberg, a Duke University specialist in pediatric
cancer and blood diseases.
The biggest question - how likely a child or adolescent is to ever use his own stored cord blood
- draws wildly differing estimates. The most popular seems to be 1 in 10,000.
To put this in perspective, a person is more likely to be killed by lightning (1 in 9,000).
There is a slightly higher chance of use by a sibling. In fact, the American Academy of
Pediatrics says that if a family already has a child with a disease that may require a
transplant, it makes sense to bank the cord blood of subsequent babies.
However, the chance of a tissue match between two siblings is only about 25 percent.
The chance of a child finding a cord blood match in the nation's public banks is 75 percent,
and even higher if international databases are searched, said Dennis L. Confer, chief medical
officer of the National Marrow Donor Program, the country's largest network of public blood,
bone marrow and cord blood banks.
•
One of the public network's members is the seven-year-old New Jersey Cord Blood Bank,
housed in the Coriell Institute for Medical Research in Camden. This month, the bank proudly
announced that four of its 1,500 cord blood units have been used, bringing in revenue from
health insurers who cover transplants. The bank has now begun paying back the $5 million
state loan that created it. (No public banks are based in Pennsylvania.)
The growth of nonprofit cord blood banking is an important public service, experts agree, but
it is facing financial, political and regulatory obstacles. New Jersey's bank, like most of the
nation's other 17 public banks, is far from breaking even. It recently stopped accepting cord
blood donations from women delivering in North Jersey hospitals, although it continues to
collect at Cooper Health System, Virtua Health, and Our Lady of Lourdes Hospital, all in South
Jersey.
"If there were lots of money to build this collection, we'd love to collect at more hospitals,"
said David P. Beck, Coriell Institute president.
Similar problems hampered the bone marrow transplant system in the late 1980s, before
federal legislation brought order - and more funding - to it. Confer is optimistic that, as the
therapeutic value of cord blood grows, support for public collection will grow.
That, in turn, would open doors for the growing numbers of expectant parents who would like
to make a tiny donation toward children's health.
"I think the untapped reservoir of people who want to [store cord blood], but don't want to
spend money, is enormous," Verter said.
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